Monday, November 16, 2009
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.
Sunday, October 4, 2009
Let's see. Where do I start?
At the end of July I met my new Oncologist. Dr. Cohn with the RMCC. So far, so good. I didn't think the receptionist was especially remarkable - but the nurse that took me back for my vitals was really nice. I wish I could remember her name. She was very personable. A PA came in and talked over my history with me and I was extremely impressed when Dr. Cohn came in later on and it was obvious that the PA related information that I had just given to her and that Dr. Cohn had listened. It reminded me of that telephone game you played when you were a kid and you whisper something to your neighbor down the line and at the end the message has nothing to do with what it started out as. Except this time it actually came out the same way I told it in the beginning. It sounds like Dr. Cohn wants me to come in every 4 months for a CT scan and also recommended some genetic gene testing.
That all would have been peachy keen with me but before I went in for my CT scan I got a letter from my new insurance company (Anthem) saying that I was not approved due to my pre-existing condition and that I needed to provide a certificate of creditable coverage (CCC). You know, this is the one condition that I made sure I would be good to go on before I quit Sun. I wasn't going to make the move if it would mean that I would lose my healthcare coverage. I was assured that I wouldn't because I had coverage with Kaiser for such an extended period of time, I wasn't supposed to have to go throught he wait period. Well, by the time I got a response on the CCC stating that I was approved - something that I finally had to fax, call on and remain on the phone until the fax was reviewed and my status was changed - it had already been two months gone by. This really makes me pretty angry. I feel like I should be reimbursed for two months worth of insurance that I was not able to use! Yeah, I guess I could wish in one hand and...
So since things finally cleared up, I was able to reschedule my CT scan. Friday 9/25 I had to go back in for bloodwork since so much time had passed, but I saw that intake nurse again and again she was super nice. I didn't see Dr. Cohn. Just the lab and the scheduler to pick up the Berry flavored ReadyCat super yummy prep drink (that is sarcasm for any of you who have never had the pleasure). My CT scan was in the LoveHeals mobile unit. It's a semi-trailer that visits several sites in the metro area for people needing CT or PET scans. Also a very cool crew.
On November 16th, I will be going in for a genetic counseling review. Because of my unusual age of diagnosis and the fact that three out of my four siblings have had polyps found, Dr C thought it would be a good idea. Actually, my mom finally went in for her colonoscopy and they also found 2 benign polyps in her. Still trying to get dad in there. I will also be seeing Dr C after/during that appointment to review the results of my scan. I know that's a long time in between, but I am sure if they see anything concerning, they will contact me sooner.
Peeps & Prayers
My last day of chemo will have been one year ago on October 8th-10th. Do you remember that big ol' end of chemo party I had to celebrate? Well, I remember how ready I was to celebrate. My friend Jeanine had her end of chemo party last night. I was so happy to be able to celebrate with her! She had six rounds of chemo for her recently diagnosed breast cancer. Jeanine is looking great, still has the most positive attitude ever and is getting ready for surgery, which she is happy so say will be a lumpectomy instead of a masectomy. After that, she is anticipating 30 days of radiation. Go Jeanine! In the words of your beautiful sister - You kicked chemo's ass! Keep up the fight!
One more friend diagnosed with breast cancer. I know that she had surgery already and from what I understand, she should have already begun radiation. I haven't had a chance to talk to her, but I know that she has faith, friends and family - which is the true miracle cocktail to fight this nasty beast. Sending you my love Cindy Kay.
My little cousin Tay who I have talked about a lot on this blog has come to another crossroad in her cancer journey. Taylor is now 13 years old. She's been battling this disease for 2 years now. Unimaginable, but real. She had been doing so much better, on a clinical trial treatment receiving chemo for 5 days on alternate weeks. Discussion was going on about the possibility of getting the medication in an oral form. Her hair was growing back and she was feeling back to normal - even ready to maybe play some sports. She was receiving scans every 8 weeks to mark her results. Recently Taylor found out that her tumor growth had surpassed what was allowed by the clinical trial (this was her second plan of treatment) and that she would no longer be able to participate. I know, I can't imagine. I saw Tay and her family at the Miracle Party this year and she appropriately was dressed as a super hero. Tay has begun radiation - I think she'll have 35 consecutive days of treatment (minus the weekends). She still has her fighting attitude and she is always in my thoughts and prayers.
And, Life In General...
Things are going really well for me. I am really liking my new job. Love the people I work with. I am shocked at how much my son has grown over the summer. He thinks he's 5' 5", but I am having a hard time believing it. I am 5' 2" and think he might be as tall as me, but mostly - people are telling me I am out of my mind and to deal with it. My baby is growing up. He's doing awesome in school. Reading like crazy (they're doing a reading challenge and he's docked about 5,000 pages) and will be going to Washington DC for their school trip in May. I'll be going to Oregon next week for a friend's wedding and am very much looking forward to that.
Well, it's been nice catching up with anyone who still checks this site out ;)
Hope you're well.
Monday, July 20, 2009
Ohhhhhh.... You mean, how am I dooooooing.
I guess I'm doing so well I forget that you might be referring to my C-stats. Or maybe it's just cause it's not a question I get everyday anymore. My peeps (the people I hang out with) know that I am doing good. Have had good check-ups. Still in remission. No more side effects. All that jazz. So, I don't mean to sound like an idiot. I didn't forget that I have cancer. I just am not thinking about it all the time :)
Annnnnnyway - there was a reason I was posting on this blog. Two things.
- New job. New insurance. New doctor. Had to move away from Kaiser. Bummer. I was really really bumbed to find out that my insurance cut off at midnight on my last day at Sun. Grrr... I thought it would go through the end of the month (only 'cause that's the way it was at RTD). If I had known different, I probably would not have worked the first two weeks of July! Grrr... Good thing is that Dr Azar made a referal for me and the 1st choice doctor is accepting new patients. I'm all set to meet him on July 30th. Or 31st. I can't remember. But anyway, that is cancer-related and therefore, Umm,-that-wasn't-the-diagnosis-you-originally-gave-me blog worthy.
- Chemo hair. Grrr... I didn't lose all of my hair and most people couldn't even tell that I lost much at all while I was going through chemotherapy. But I did lose alot of hair and I think it's growing back and doing it's own thing! I am hoping that the issue is just the new growth is at an awkward length and it's just a little (lot) unmanageable. I am hoping that once it all grows out and evens up it will be better. I am hoping that these spastic cowlicks aren't forever. I spend a good hour trying to blow dry it straight and then get frustrated and put it into a ponytail. In an effort to save me the hour (and a lot of frustration) - I've been skipping the blow dry and opting just to go straight for the ponytail - appearing to be really, just lazy. I know. I shouldn't complain. This isn't complaint-worthy at all. But, I think it's cancer-related also - so it was something to write about. It does make me greatful that I don't have anything really worth complaining about though.
Wednesday, May 6, 2009
My Reason to Relay
I Relay because I want to see an end to cancer during my lifetime.
I Relay in memory of those who did not live to see that. For my Godmother. My uncle Ronnie. My Grandpa. My Uncle Sonny. For Coleman...
I Relay in honor of amazing Survivors who inspired me and gave me great hope in my own battle. For Matthew. For Heather. For Sammy. For Heller. For Tracey. For Nadine...
I Relay for the families and friends and anyone else affected by this horrible disease. That's YOU! because, cancer affects EVERYBODY!
Sunday, April 26, 2009
She's a co-worker of mine, but we're in totally different departments now, so I don't see her much. We occasionally jot notes to each other on Facebook. I do consider her a friend though in the fact that I enjoy spending time with her when I do, wish it was more often and would keep in touch with her even if we didn't work at the same company. My point is, we're not close close friends, but I do care about her and this news has been on my heart since I found out.
She was not the one who gave me her news. It was another co-worker.
I want so much to offer support to her, but I do not want to intrude uninvited on such a personal and undoubtedly devastating time in her life. I have always tried to NOT be the kind of person who says "I know how you feel..." but at the same time, I feel like I can at least maybe relate to some of what she is going through. The unknowing part. The where do I start - how do I start - to deal with this part. I think about how I wanted to find people who knew what I was going through and what I was going to go through to "interview". You know, like I remember really wanting to know what the "banana phone" looked like. I guess I just want to offer that up to her, if she is looking for that too.
The thing is, I know that my experience was mine. In so many ways I just don't really understand why mine was so different than what I have heard other's have been. It has been probably the biggest cause for the question "why". Not "why me?". Just "why" was mine so different. I don't understand. And I don't know if anything I would have to say would offer help or comfort to her.
I do know this. I believe it was more than my youth, my attitude, my support of family and friends, my faith, my humor...
As I have said - before I was diagnosed, I always thought being told you had cancer was the same as being told - your life is gonna suck from now until you die - and you're probably gonna die soon. My only experiences with cancer were all that. Pain, diagnosis, agony through treatment, loss of quality of life, and then - death. There was never any recovery. And on the one rare occasion I can remember that there was not - I was always waiting. It was not a morbid fascination or anything like that. It was just how I believed it would be. It was my life experience with cancer to that time. I was always asking, how is uncle Jerry? It never entered my mind that he could be "better". Living life. In my mind, he was always in a fragile state of being, at risk of being broken at any moment.
So, where am I going with this? Well, it's about stories. Real stories that made surviving and living REAL. I do attribute my own experience being a "good" one (comparatively speaking) to all of the above, but also to some dear friends who chose to share their stories with me when they learned of mine. Matthew. Heather. Sammy. Tracey. Nadine. Heller. I was in wonder with most of you when you told me your survivor tales. It wasn't just a matter of having hope (which, don't get me wrong, I have always had hope) but you made surviving be real in a way that numbers coming out of my doctor's mouth could not. You erased the myth that had occupied my mind ever since the word cancer had entered it. I see it in a whole different way now.
Hearing my friend's news broke my heart. But I feel like at the very least, I can offer her an "aura" of hope and positive energy and honest belief that she can add her story to the list of survivor stories I have.
Oh gosh. This is turning into rambling (but I think that's what this blog was created for :) What I wanted to end with was some unsolicited advise, knowing that these things will not work for everyone. Maybe they won't work for anyone else, but they are things that I found helpful in my own experience - and if they can help anyone else, well then, that would be pretty awesome too...
- I was open with my diagnosis with friends and family - well, and pretty much anyone who cares to know. I tried to lean on them when they offered - and appreciated their company at each of my chemo appointments!
- I blogged. I recently had my one year anniversary and I was happy to have a record of this time in my life. It makes me appreciate where I am now quite a lot.
- I tried to "get ready", at least once a week. I found that if I felt like I looked as sick as I felt, then I felt worse! But if I got ready, I would actually feel better. This may be a given for lots of people - but when you have the opportunity to sleep til noon and hang out in jammies all day, sometimes you do! Lazy is as lazy does?
- I looked for positive stories and resources and focused on those.
- I tuned out the negative.
- I listened to my body and rested when I needed to - but I also did "fun stuff" when I was up to it (and I did a lot of fun stuff!).
- I laughed.
You are in my thoughts and prayers J! - xox
Friday, April 3, 2009
While I was waiting, I saw the head nurse Julie head over to the elevators. I had wondered if she was there because I wanted to stop in and say 'hi' to her, so I went over and asked her if she remembered me. She had to take a look, but then said "Oh yeah! Your hair is longer and you have glasses! You look great, how are you..." and gave me a big hug. Her elevator came and went and she stayed and talked to me for a bit... saying it was good to see me back and doing so well. It's not always the case with some of her patients. I could only imagine how hard that would be. She gave me another hug before she said goodbye.
I don't miss chemo, but it was very strange being there all the time for six months and then all of a sudden - not. I felt like I was surrounded by some very compassionate people who really cared about me, and it kind of didn't make sense to just remove myself from that. I know, that probably doesn't make sense as I write it... in my head it does.
Dr Azar said I am doing great and that my test results were all good. The biopsy from the mass found in my exam came out benign. CT scan, clear. Oh yeah, I forgot to do my bloodwork lab. Oops. I did stop by and do that before I left and she'll let me know if there is anything to be concerned about.
I asked her a couple of questions -
- What would be a call for gene testing? Two out of my three brothers had polyps during their colonoscopies and I think my sister did too. She is noting it and I guess there is a wait but I might be called in July or August to fill out paperwork for that to see if I qualify (not sure if that's the right word) for the testing.
- Since I was told that I would be considered "cured" if the cancer doesn't metastasize in five years, is that from my surgery date or my end of chemo date? She asked me "Why, are you planning a party?" "Heck Yeah!!" But really, I just want to know. She said that it would be from my surgery date. And it's likely that if it will, it will probably happen within three years. It's very unlikely that it would happen after 5 years. The thing is, (she told me very frankly) - it could happen. I could also get "new" cancer.
- What would be the word to describe me in terms of cancer? She said, "I really hate to use the term cancer-free. You're never going to be able to donate blood. You're never going to be able to stop having colonoscopies. This is always something you are going to have to keep in check. You're in remission. We hope we killed all of those bad cells with the chemo, that's why we were so aggressive, but we just don't know yet. And if you have that mindset (cancer-free/cured), and it does metastasize - you'll be pretty pissed thinking you were cancer-free." Honestly, I can deal with the term remission. And honestly, I don't care what you call me right now, if it comes back - I think I'll be pissed.
- Will I ever have a PET scan? I have heard this term in regard to cancer a lot and have also been asked. My prep for this appointment was a colonoscopy and a CT Scan. To tell you the truth, I don't know the difference between a CT, a PET or an MRI. I trust that Dr. Azar is recommending the tests that she thinks will best suit my health needs. She said that she doesn't think that a PET scan is necessarily better, but it gets a lot of talk up in cancer circles. Each scan will detect masses, which is the point. As far as we know, all of the cancer was removed during surgery and since there was no evidence of it affecting any other organs, and there was nothing on my scan from last month - there is no change.... no growth. So as of right now, no PET scans. And the clinical trial I am on will cover the cost of my CT scans every 6 months.
Wednesday, March 25, 2009
I had my surgery one year ago today.
So if it's true that the cancer was effectively removed in that surgery and that it hasn't spread, then I am one year on my way to being considered cured.
One down, four to go.
I know, it might seem out of control - all these "anniversaries" - but the truth is, they're on my mind. I replay in what was going on at this time last year in my head over and over again. A lot of reflection going on and I couldn't tell you if it's good or bad. It's weird... and emotional.
Monday, March 9, 2009
Sunday, March 1, 2009
If 2009 were a leap year, today would be February 29th. On this day last year, I made a trip to the doctor's office that put things into motion in a way I would have never dreamed of.
I've went back and read my blog from beginning to end. And I know, it's a book! But I am so glad I documented this journey. I know that I will look back on it in years to come and be grateful to remember all of the things that had a positive effect on this time in my life.
What a roller coaster ride the last year was. Physically, I feel back to as normal as I ever was. Emotionally - I don't know. Probably never will be the same, but I hope only in a good way.
Tuesday, February 10, 2009
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...
Thursday, February 5, 2009
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... :)
Friday, January 23, 2009
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
1. Of a kind or gentle disposition; gracious; generous;
Creator bounteous and benign. --Milton.
2. Exhibiting or manifesting kindness, gentleness, favor,
etc.; mild; kindly; salutary; wholesome.
Kind influences and benign aspects. --South.
3. Of a mild type or character; as, a benign disease.
Syn: Kind; propitious; bland; genial; salubrious; favorable
salutary; gracious; liberal.
Thursday, January 15, 2009
I do have to correct myself - it was a "mole" I went and had checked out (4 of them), not a birthmark... but birthmark sounds better to me. Like it's not my fault, I was born that way. Even though, I wasn't born that way, the moles just came on their own accord, I guess it's still not my fault... what?
My appointment was easy breezy lemon squeezy. It was scheduled for 2:15pm. I checked in at 2pm like a good girl. Took my time going up, grabbed a seat and started to read my book. Boom! They were ready to see me. It only took a few minutes for the doctor to come in so really, everything started right on time. I showed him the marks and he looked at them all, stopping at the one on my stomach and saying "yeah, we better remove that one".
I said "okay". And he left the room for a minute. I thought to go and get the nurse to schedule an appointment or something - but noooo. He came back in with her, advised her what to enter into my records while he jotted the area with alcohol. Then he said, "I'm just gonna give you a shot to numb the area..." (what? now? right now? I'm not even laying down.) "You'll feel a little sting, and that will be the worst of it. And then I will take this razor blade and scrape it off." (WHAT?!?! You'll what?! Can I have a blindfold at least?)
But he was right. I turned my head to look at the nurse while he did what he needed to do. Before I knew it, she was applying antibiotic and a bandage and I was ready to go. He said they will send it in for testing and they'll get back to me with the results - but he's not worried too much about it. So I guess, neither am I.
I didn't stop by Oncology. I thought about it... but really didn't know who in particular I would be going to see. If I had a bag of candy with me that I could have dropped off, that would have been different. Maybe next time.
Wednesday, January 14, 2009
I received a call from Kaiser about a referral. She asked me if I wanted to schedule the appointment. "Sure. What's it for?" I had forgot I was supposed to go in for a blood draw shortly after my chemo ended. My magnesium or something was low. I never went in. But this call wasn't for that, it just reminded me of that. The referral was for dermatology. Dr Azar thinks I should get some of my birthmarks checked out. I had actually been advised of that once before and I guess I blew it off. This time, I decided not to.
So, tomorrow I will go back to the medical center and get things checked out. Maybe I will stop by and say "Hi" to the Oncology peeps. It's been a while... Do you think they'll remember me? I wonder if the hospital smell will bother me as much as it had back in October...
I also have my first colonoscopy scheduled. Yay. I'm so excited. (In case you can't read it, that was sarcasm). I'm a bit nervous about it, but (or should I say - butt) I guess that's normal. I'll be getting that puppy done on February 5th. In anticipation of getting spectacular results, I am planning a celebration weekend. Yay! (That was real excitement :)
Thought I would mention, I've started a new blog. It is not nearly as factual as this one. No blood counts. No medical termonology. I decided I would keep this one more about the "big C" and the other one is about fun stuff. Mostly eating, cooking and other stuff I do for kicks. Anyway, if you get bored and want to check it out - it's posted at http://wholelottahappy.blogspot.com/.
Thursday, January 1, 2009
You may have noticed my postings have slowed down. Life seems pretty much back to normal and I am enjoying that.
I've been back to work full-time over a month and things are going well there. I am very happy to still be employed, although very aware that Sun will be cutting a lot of their workforce this year. I've decided that worrying about what might come in that realm is out of my control so have opted not to give it much thought or energy other than to just keep doing what I do.
Physically, the last thing that was bothering me aside from fatigue was the neuropathy. While I wish I could say it's gone away completely - I can't. But... I can say that it's either stopped getting worse, or I've become more used to it. Either way, it's not bothering me as much as it had been. I don't have to wear gloves all the time and I don't ever get to the point where I feel like crying about the pain either. And, I've been able to grow my nails out. Little things bringing me back to normal.
Overall, I had a great year full of blessings. I am, however, ready to say good bye to it and move on to an even better new year. I've never made New Year's resolutions before in my life, but have been thinking about some things I might like to do... Take some classes (cooking, dance, sewing) , drink more water, read more books, take a trip, have another wine tasting party, be one year closer to being cured.
Sounds good to me... let's get started.