Reflections of The Heart

Ok first I apologize if there are a bunch of typos here. I’m posting from my blackberry. Secondly, for those who don’t know my cancer has come back and spread. In July we took out a tumor in my lung surgically. Went in with bad chest pains two Wednesdays ago. PET results Friday showed three new tumors in my lung measuring 13, 14, and 15 mm. Also showed a 2 cm mass in my chest wall, a 2 cm mass in my right pectoral muscle and a 7 cm mass near the lining og my heart. We go in Monday to see Dr Godwin new oncologist bc Dr Rao told us no point in treatment and I need someone who thinks there is a chance on my team. How am I? Tired, in pain, scared out of my wits, in pain, confused, in pain, angry, in pain, sad, in pain and determined – not necessarily in that order. I’ll try and post dr. Appt results.

Ok so the scans came back clean YaY! I do have a tear in my knee and see the surgeon about that on Saturday but it’s not related to the cancer (though explains why I have sooooo much pain in PT) so I’ll update on that next week (probably Tuesday or after so that I can update ya’ll on the CPS-3 initiative for the American Cancer Society as well since I have a meeting for that on Monday night…Remember most Relays for Life are coming up SOON! Anyone interested in Sangamon County’s Relay it’s on June 20th and the website is here…Let me know…I know some peeps trying to get a team together!) Peace out and love to all!

Hey everyone. Long time no update…sorry…it’s been…well it’s been. I’ve had several inquiries into how I’ve been doing lately (shout out to Jen Ann and Morgan and Amber who’ve most recently asked) so here goes. Well as the one year anniversary of the diagnosis date has approached and past (April 11th), I have realized that while the years have seemed to have flown by since college this past year was potentially the slowest year of my life. Physically I’m doing pretty well. Back in PT (60 degrees active when I really push it) and that’s going well except for the excruitiating pain in my knee…tolerable pain in my thigh but the knee is bring me to tears and want to scream bloody murder pain. We do 6 month scans on May 6th and go in for the results May 11th…Yes I promise I will post that day to give results, I’m even putting a reminder in my phone right now. (for 6:00 PM CDT since the appt isn’t until late morning/early afternoon).

Otherwise things are. They just are. Physically, as far as I know, I don’t have cancer anymore, emotionally/psychologically this stage has been, overall, the hardest part. I mean chemo and that last hospital stay were individually worse, but at least then I felt like I was fighting something, that I had a purpose and that there was light at the end of the tunnel. Now I feel a lot more discouraged than I ever did last year. I am not a pessimistic or depressed person normally, but lately it’s all I can do to put on a happy face. I have a lot of anger inside, a lot of resentment and a veritable OCEAN of frustration all boiling around. It feels like all the negative emotion is trying to gobble up the positives, which I guess is what negative emotion normally tries to do but I’ve always had enough positive to prevent that spiral. Now however…sigh.

Ok this next bit may not make sense but I’ve got to ummmm vent I guess. My whole life, I’ve always tried so hard to make sure that I live by the rule that there are at least three sides to every story (3 if there are 2 people involved, 4 if there are 3 people involved etc). Yours, Mine and the truth. We all see things and react to things on an individual basis which is very rarely more often never going to be the “reality” of the situation. And the person with whom we are interacting is going to have their own “filter” through which they view any situation. I’ve always tried my best to put myself as much as anyone can into the other person’s shoes when interacting with others. 90% of the time I would then alter my own if-it-were-only-me reaction to fit to, emcompass, offer understanding to the other person.  I’ve always felt I’ve done a pretty good job of it. And I’ve always felt positive about my interactions with other people and my reactions to and with them because of this. In otherwords, the emotions I felt were generally positive ones, compassion, understanding, caring, liking, etc. In the past year I’ve focused so much on the small sphere of myself (as I type this one side of my soul is crying “DESERVEDLY” and the other side is crying “unfortuneately!”) so I don’t know if this is why but it seems now that while I still try to understand where the otherside is coming from and I still alter my reaction or interaction sometimes in accordance, about 75% of the time now I have a lot of negative reactions, i.e. anger, frustration, outrage, disbelief, uncaring in reaction to it.  I find myself more quickly jumping to “I don’t care damnit” than “I understand and I want to help.”  It frustrates the hell out of me.  I get sooooooooooooooooooooooooooooooooooooooooooooooooooo angry with myself for even thinking that way and that perpetuates the cycle of negative emotions. 

In the past year I feel like I’ve gone from happy to angry and purposeful to purposeless.  I’ve lost relationships and every relationship has changed–98% of them negatively and part of me shouts “not your fault or problem” and the other part doesn’t shout anything…it just constantly weeps for the lost and changed relationships.  I feel like the majority of people treat me like a) I’m normal again when I’m not, b) like nothing ever happened when it did c) like I’m about to break when I’m not or d) they just don’t bother to interact with me at all.  And while 50% of this feeling is probably all in my head, I’m also sure that it’s actually happening the other 50% of the time.  And I don’t know how to deal with it.  I AM better and can physically do so much more than I could even a month or two ago.  However, I still can’t drive so I have to depend on someone else for ANYTHING outside of the house.  I still can’t sit for longer than about an hour without getting up and moving around.  I still can’t be up and moving around for longer than about 15 minutes before I have to sit.  I’m beginning to accept that 100% will never be again (and that’s not pessimism speaking, just realism…hell if I’d let him, I’m 80% sure based on Wednesday’s appointment my surgeon would actually say “you’re good…no more need for PT or to see if you can go any further because you’re further than I ever thought you could get at 60 degrees active knee movement”).  But there is still so much that I CAN do…I can shower by myself now, though I still won’t if no one is home b/c it’s still really difficult and I’m fearful that the first time I tried to when no one is at home would be the time that my leg would give out on me.  It’s pretty much warm weather now so I don’t have to have help for my socks anymore yay!  But I can’t physically or emotionally jump back into life like nothing happened or like I’m anywhere close to where I was 13 months ago, because I’m not.  So basically, physically I’m fine though I still get tired and worn out a lot faster than I ever did before cancer.  But as for emotionally/psychologically?  I just am, and I haven’t fully decided what to do with that fact yet.

I’m home. I’m in a lot of pain which I wasn’t expecting since I had virtually no pain the first time. HOWEVER, while I didn’t talk to Dr. Allan, he did talk to mom and she is very relieved after what she said he said. She said the first thing he said was “It was all fluid”! Yay! Apparently they took the core needle biopsy still and sent it for analysis but after he got in there, he’s confident it is just seroma (sounds like sarcoma, but sermoa is a case where fluid builds up and the body can’t absorb it after surgery…rare for surgery patients (about 4% of all surgery cases) but fairly common for cancer surgery patients (about 10-15%)). They drained 360 ml/cc of blood stained fluid from my upper thigh and abdomen which wasn’t all of it (i.e. lower thigh and right above knee still has fluid there) and it’s already filling back up with fluid this afternoon, so it will be an ongoing issue, but not life threatening! We go back to see the doc on the 25th of February for the official biopsy results but again, he said he was confident that there was no sign of the cancer! YAY…anywho, I have to stay in bed and keep my leg elevated for the next 48 hours and then take it easy on my leg which means no more PT until this issue resolves which from my research on the internet could be anywhere from a couple of months to a couple of years! So annoying but again the lesser of two evils so yay! Just letting ya’ll know. I’ll post the official biopsy results after I see the doc on the 25th, but for now I’m signing off b/c the pain meds work to dull the pain but the pain is still there PLUS I’m loopy/drowzy from the meds so… Love and Peace out to all!

Ok so in the last post I mentioned that my PT was on hold because of the fluid in my thigh. Well actually it was fluid in my thigh and well I guess you’d call it pelvis. Went back to the doctor last week to see about starting PT again and just how the fluid has been in the past month. The body should be absorbing it, but instead the area is actually getting bigger and harder. The top of the “hard” area is even with my belly button (which makes wearing pants VERY uncomfortable) and very hard. It spreads from my hip to about my belly button again, though not all of that is hard some of it’s firm but squishy, and everything in that area hurts badly enough that my pain meds aren’t touching it. The good news is the pain in my thigh is less though so it’s like an even exchange.

ANYWHO, to make a long story longer, I don’t think the surgeon knows for sure what it is. The MRI looks like fluid, however since it is getting bigger and is soooo hard, we are doing a biopsy on Thursday Feb 12th in the morning “for everyone’s peace of mind” (quote from my surgeon). While he’s doing the biopsy, he’ll drain anything that actually is just fluid, so I’m hoping he’ll drain it all and we’ll continue happily on our way with PT. So anywho, please pray for a clean biopsy (good actual experience under the anesthesia as well as negative biopsy results–negative for cancer not negative as in bad results).

That’s about the update right now. Working on my thesis proposal (met with my advisor who liked my topic so now I just need a formal proposal for the department). Otherwise that’s about it. I’m pretty ready to be pain free and start PT back up again. I’m back to not being able to move my knee much at all and I’d really like that to be fixed.

Hope all is well with everyone! Love to all! Peace Out!

have been crazy lately. A VERY brief update
1. Kara fell down a flight of stairs in mid-december and dislocated 2 fingers which were reset but scarring inside her fingers occurred so she will never get full mobility of them back. Can’t drive right now so mama is driving me AND Kara where we need to go. whew poor mama
2. I started PT but am on a break from it because I fell on Christmas Eve and there was some bleeding into the fluid cavities which caused some hinderances in my hip joint for mobility so we have to wait until mid-february to relook at it and see about continuing PT…I’m in constant pain but it’s not OMG pain (when I fell I was literally screaming in pain but it’s just a dull ache all the time now…walking and sitting are both difficult which makes for fun times…NOT!)
3. Everyone is on edge b/c well it’s just been a long hard road for everyone in my household and tensions are getting strained

Those are the big updates…no promises when more updates…sorry…life keeps getting in the way and when I DO have some time to myself all I really want to do these days is sleep so there ya go.

So here’s the lowdown…feeling crappy today…tooth pulled yesterday…supposed to be simple…the student dentist broke the tooth and left the roots intact…dental prof had to come in and cut out roots (don’t ya love it when pulling a tooth turns into oral surgery? Note: hearing the dentist say “uh oh” is never good)…anywho as a result pain is icky but the big thing is it’s having a really hard time cloting due to the coumadin sooooo hopefully it won’t get dry socket! Pray with me please on that…no more pain do I want…anywho other than that…eye dr. thinks it’s optical migraines and not actually damage to the retna or optical nerve from the chemo…however we’ll be doing more extensive tests in January…in the meantime, I can’t watch a lot of TV or be on the computer much (hence the long time to reply to emails…sorry to all) until we figure it out…esp. since he thinks that is probably causing the optical migraines…which sucks as it prolongs the going back to work thing…physical therapy starts tomorrow…at least 4 weeks of that before I can go back to work too soooo yeah that’s where we are…have had some great days recently but still tired a LOT…according to doc and research that is normal…it’s pretty much a 1:1 ratio…for every month of treatment it takes a month to regain previous energy…so it’ll be about 9 months before I’m feeling “normal” again as long as all goes well from here on out…ICKY!!!! So anywho I’m pretty sure that’s it…but in the meantime…God is good all the time…also in the meantime…tagged by my friend Chris with this so here it goes

1. Band Name: Random Wikipeda Link

2. Album Title: Random quote generator (take the last four words from the first quote on the page)

3. Album Art: Flickr Interesting Photo (pick one)

So my album Worth A Hundred Cents by my band The Social Responsibility Theory (ironically, I’d actually name my band this…I like it!) will be released soon for the wonderful price of…wait for it…100 cents.  Album art link here (I can’t figure out how to insert and image…huh).

spaceball

Sangamon County Relay For Life

2009 Relay For Life - Sangamon June 20, 2009 at Illinois State Fair Grounds I'll be signing people up for the CPS-3 Initiative that night. Stay tuned for more information on that after my informational meeting on May 18th! Important Study folks! Our goal is 400 people! So come out and help fight the war against cancer!
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