Finding Me Again

So much has happened, yet not much has happened all at the same time.  Emotionally, I fell into a funk. A whirlwind of depression and anxiety. It scared me. 

Apparently this is a normal part of the grief process. Normal or not, it took me down... and hard! 

Today I feel good. I had an "ah hah" moment, or strand of moments, that has opened my eyes to several things: 

• I choose to empower myself to live well with Cancer, and not define myself by Cancer.
• I choose to take better care of myself, especially physically
• I choose to let go of the pseudo control over my life, and give myself permission to be o.k. 
• I have Cancer, but it doesn't have to have me

Coasting

Wow, it's been a little while since I've been here.  Let's see, where do I begin.  I had my endoscopy (I don't remember if I blogged about that yet), and unfortunately the Cancer is still there. 

I will have my PETscan on April 24th, and I see my Oncologist again on the 28th.  My birthday is on the 26th. Hmph, good timing. 

My love and I went on a lovely vacation to visit family in Virginia. Now we're back, getting into the swing of things with normal every day life. 

I had a horrible nightmare last night.  I dreamt I was in the hospital, hooked up to IVs and chemo, and I was... dying... 

I'm vacillating a lot lately between levels of depression and anxiety.  This 'coasting' in just killing me. I want to get back on the ball. Treatments, chemo, surgery, radiation - SOMETHING. Do something! I think it's just the amount of how out of control I feel right now. 

I have been having great sessions with my therapist. We are beginning to work on ACT (Acceptance and Commitment Therapy) specifically surrounding the Cancer, but obviously integrating it into other parts of my life as well.

Been thinking about my birthday lately too. I usually love love love my birthday.  It's the one day out of the year I truly dedicate to me, to self care, to treating myself, etc.  I'm actually kind of scared for my birthday to hit.  This year it'll be different. I'm scared to go 'too far into myself'. I am scared of dedicating the day to me, to really caring for myself, treating myself, loving myself... I am scared at what lies there now, now that everything is different.  I am scared of the fear. I dread it. I am angry because I don't want it to be there. Yet, it is. 

We are all going out for dinner at a local sports bar, and then we're going to a local gay bar thereafter. 

My fiance is also getting me a tattoo for my birthday, actually I'm getting it tomorrow.  I'm getting my dragonfly fixed on my inner forearm, and getting a cancer awareness ribbon added (my color for non hodgkin lymphoma, which is lime green.) 

Well that's it for now...

I thought it would feel different...

I had my endoscopy yesterday to see how the Cancer is responding to treatments.  Good news, it IS responding. The tumor is much much smaller.  

As I was wheeled into the procedure room, and getting set up, my GI doctor was telling the OR nurse and anesthesiologist about my 'case', apparently quite rare of a Cancer is someone my age.  My doctor looked at me and said "We think of police officers and firefighters as hero's, but I think of you as one. I only wish I was as strong as my patients like you." I got choked up, partly from what he said, and partly because I was going into my procedure not knowing where we were at with the Cancer.

When I woke up, my fiance was there. "It's so much smaller baby, treatment's working.  The doctor said you did it!" 

I lost it. Literally. Sobbing uncontrollably. 

Don't get me wrong, I am very very glad that the tumor is responding. So is everyone else in my life. The support is plentiful. Part of me though, is so so overwhelmed.  My therapist says it's all hitting me now. I'm grieving. Yes, I do believe I am.

The doctor did a biopsy, so for now it's wait and see. 

The biopsy results should be back in about a week. I see my oncologist in about a month. 

The endless cycle of doctors and tests and results and waiting and more doctors, and nurses... 

Even when I am in remission, Cancer will forever 'be' in our lives. 

For this is our 'new normal.'

Picking up the pieces?

The last month has been a rollercoaster of emotion, a balancing out of physical well being, and just plain seemingly crazy. 

I contracted a bad infection/abscess and dealt with that for a good two weeks.  Had to have it lanced and drained twice, once by the surgeon.  It was quite the ordeal, but thankfully it's O V E R! 

Emotionally, since ending my first round of chemo, I've been struggling. I am working on realizing that just because I 'feel' bad, doesn't mean I'm 'doing' bad.  My emotions have been all over the place, but I am grateful for my support system, plus my therapist is amazing. 

I have an endoscopy on Monday. We'll get some answers then. I'm nervous, scared, numb, confused... is the Cancer still there??? Is it responding to treatment ??? Is it gone ??? 

Then I have a PETscan in a month. 

In a way, this 'post' treatment stuff is harder then the actual Cancer. I know I still have a long way to go, best case scenario I won't be done with chemo until June of next year, but I have a feeling that emotionally I'll hit a dip each time.

Yet, I will press on...

And the fear struck...

We all fear mortality. Funny, I haven't feared my own since all this started. To be honest, after the initial diagnosis, I have just feared how hard the treatment would be.

The other day, the fear struck. I have been reading a lot about people who have died, some younger than I even, from the same type of lymphoma I have (Non-Hodgkin B cell follicular) I've read these things in the most random of places.  And it hit me. Faced with my own mortality, and how much that terrifies me.

The doctors say I won't die from this. Granted, it may come back, but they are 'optimistic.'  But that fear... it's outrageously terrifying.

Still, I try to remain as optimistic as the doctors, and for the most part I am. I think when one is standing face to face with their own mortality, fear is completely and totally normal. and rational.

I'll have to talk about this with my therapist when I see her tomorrow...

Magnitude

So I did it. Finished the first round of chemo. 3 more rounds left, but I have a 4 month break between all my rounds.  I was feeling so excited... as I walked out of the chemo room I was elated, relieved... as the night has gone one, I've begun feeling quite overwhelmed. Emotionally tired. Emotional period.  The magnitude of the days events has set in. To be honest, I want to crawl into the fetal position and just cry.  Funny, funny that something so huge - such a huge feat as to finish an entire round of chemo and come that much closer to kicking cancer's ass, has my 'emotional' ass whupped. A large part of me feels empowered. Yet, small pieces of me feel broken. 

I need space. So as my precious fiance sleeps, I am moving into the guest room for the evening.  She's not even snoring tonight, LOL! I don't know, I just feel clogged... claustrophobic even... 

I'm sitting here blogging and sipping on some peppermint tea. It's soothing.  The downstairs is cold, but it's warm and cozy upstairs where I hope to sleep soundly.  UNfortunately, I've got steroids pumping through my system, as that's part of my IV cocktail prior to the actual chemo drug.  So being awake the day of chemo, and sometimes for a few days thereafter, has become, eh... expected.

I'll finish my tea, mozy on upstairs, and curl up in the guest bedroom bed - which actually is quite cozy. 

Goodnight, world. Until tomorrow...

Funk no more

Hello world! I took a break from this blog, because quite frankly I was in a major funk. During this, time has passed and I'm happy to say that with the new year comes a break from chemotherapy!

Today is my last treatment of my first round. Whoohoo!

In 2 months I'll have an endoscopy and a PETscan to see how the Cancer has responded. In 4 months from now, I'll start my second round. Thankfully, the next 3 rounds will only be 4 weeks instead of eight.

The second half of the 1st round was rough, much rougher than the first half. But, I made it through, in part thanks to my amazing and loving supportive fiance. Tonight after chemo we are going out to celebrate.

Alot has happened over the last month, and I've had an awakening of sorts.  Mentally, to be quite honest, it was kinda hellish. Thank you to my dear therapist. She's amazing.

With that said, I'm off to chemo. I'll be back though. Peace <3

Merry Christmas!

I have to say that despite everything that's happened over the last month or so, this has been one of the best holidays. 

As usual, the first few days after chemo was rough.  This past Saturday we had her holiday Christmas party, which btw was amazing. Held at the Omni hotel, we partied and stayed overnight in a swanky room. LOL! 

Christmas eve day we drove to Louisiana to spend the day with her very large family. It was nice, a bit overwhelming with all those people, but definitely a good time was had by all.

This morning we woke up, and had our little Christmas. It was very nice. Our first technical Christmas together, as last year we didn't have our first date until December 29th. 

Spending the day today later with my momma and my love, looking forward to the rest of Christmas. 

Tomorrow, back to the real world... and chemo... but I'm surprisingly ok with that (for now, anyway.)

Merry Christmas!

De Ja Vu

I'm sitting here drinking Starbucks, and in 3 hours I'll be in a chemo chair. Hah, dejavu from last week. 

I've completely neglected this blog over the past week, chemo was kinda rough all around.

The infusion itself was 6 hours long, and the chemo room is packed. I hear it's like that pretty much all the time. It was chair next to chair next to chair. If you get a chair in the middle you can recline, but you can't use your table unless it's at the end. If you get a chair on the wall, you can't recline but there are random plugs that you can plug electronics in and such.  Meh. Oh well, you win some you lose some I suppose. 

The night of my first chemo I was feeling achy. The next day more achy and tired. The day after that no achiness but completely exhausted.  Then the following 2 days nauseated and vomiting.  And now we're back to it.I have chemo a lil later today, 11:30am.  This infusion and the ones from here on out should only be about 4 hours long.

That's about all for now. Peace <3

Starbucks & Chemo

So I'm sitting here on this lovely morning sipping on a pumpkin spice latte. Hard to believe that in 3 hours I'll be in a chemo chair for my first infusion.  I have some things to get done this morning around the house, trying to keep my mind occupied for a bit. 

My fiance is torn apart about not being there with me, she's blown through her PTO in the weeks that we've gone through thus far, and her boss is being so good about her taking off.  Plus, to be honest, I'd almost rather be there alone. I am going to try and look at it as my ' me ' time.  I'm gonna emotionally put myself in a bit of a bubble.  I have stuff to do, a couple of books, relaxing music, my cozy blanket and pillow... and of course my fuzzy socks. 

Not much to say this morning, but thought I'd check in on this blog... 

Unexpected

Went to the Oncologist yesterday, and it was not what I was expecting.  We got the gameplan, as far as when I start treatments and such, and just what we're looking at: both financially and length of time.

OUCH. on both accounts ☹

 
The financial counselor and my fiance both told me not to worry about the financial part, to just concentrate on my health and getting better. Hmmm, easier said than done.  There's a HUGE part of me that carries guilt about this. I know, I know, it's not something that was in my control, but still... Le sigh...

As far as how long this is going to take.  The bomb was: 2 years.  We were expecting 1 year, but with what they call "maintenance"  treatments, it'll be 2.  I'll have 2 breaks during those 2 years.  As well as tests, PETscans, and a couple of more endoscopies to see how the Cancer is responding.

Yesterday was an awful day emotionally, I was an emotional train wreck. Not quite sure how I'm doing today, as I just woke up and am sipping on some coffee and journaling here. 

I start treatments tomorrow. First treatment is SIX hours long. oy yoy yoy.

That's about it... Until next time...

All mixed up

In about an hour I see my Oncologist. I really do love my Oncologist, he's a great doctor it seems and he is very personable. But still, he's an O N C O L O G I S T.  When I see him, the big C is in my face.  I suppose I'm getting used to it, but not by choice or liking. 

So I see him today in about an hour.  Today's the day: the day we get the gameplan. I will start treatments this week, I'm thinking probably tomorrow or Wednesday.  It's all very, very real now.  Don't get me wrong, it became real the moment the diagnosis came flying out of my GI doctor's mouth.

But... this is different.  all the tests and the doctors appointments and the port placement and going here and there, and our heads spinning every which way has kinda lead up to this. 

I'm all mixed up emotionally, today.  I am feeling:

overwhelmed

relieved

tired

scared

disbelief

anxiety

anticipation

Suppose that's all normal.  It's weird, I was thinking earlier that I haven't really cried over this as much as I thought I would have.  Sometimes it feels as though the tears are there but they just don't come.  I try not to analyze it too much, and to just go with the flow. 

I am overwhelmed:  This is a whole lot of 'big girl' stuff. Nobody should ever have to deal with this. 

I'm relieved: Finally I'll be starting treatments and have some semblance of a routine.

I'm tired: Physically and emotionally. 

I'm scared: I'm scared of the treatments themselves. I'm scared of relapse after remission.

I'm in disbelief: Part of me still can't wrap my brain around the fact that this is really happening.

I feel anxiety: ALOT of anxiety. 

I am anticipatory: I wanna just get goin'. 

Life's about to get real different.

Sleep is overrated? Nope I think not!

I am still waking up every two hours around the clock. Despite my cocktail of night time medication. I saw my therapist last week and she agreed that having a good sleep schedule is going to be imperative to part of my recovery. I know that, yet my body wants UP.  Then of course, I try to lay there and get sleepy... and nada. 

I went to Diabetes Center of America today. I am also Diabetic, in addition to the Cancer.  I've been Diabetic for a while now, but it's been hard to control even with oral medication and long acting insulin. My diet isn't necessarily half bad either.  I'd assume the challenge to control the Diabetes, comes in part from the Cancer.  So, anyway, my doctor there is putting me on fast acting insulin as well, especially to offset how high my blood sugars are going to get when I start treatments. Between the treatments and the steroids, it's going to be a doozy. 

While in her office, I almost started crying. I choked back the tears. It hit me pretty hard, how difficult it's going to be to keep myself well during all of this. 

Coming down to the wire, though... It's early morning Saturday. I see the Oncologist on Monday, I see my surgeon for a follow up of the portacath placement next week. I'll be starting treatments next week as well. 

It's weird how unbelievably slow these last three weeks have gone. Between all the information dumped on us, all the preparation to get started with the Cancer treatments, and it's finally pretty much here. Part of me is relieved, actually. Probably more of me is relieved than not. Of course, I don't want to be going through all of this (duh) but at least I can see the light at the end of this waiting tunnel. 

We're going to see her family today is Louisiana. That'll be nice. Then tomorrow my dad is coming over :)

That's about it for now. Until next time...

Surgery

I had my portacath surgery yesterday, and begin cancer treatments soon. OMG, I'm in pain. Not only that I have been waking up every 2-3 hours around the clock. ugh. I'm quite annoyed and frustrated this morning. 

Just have to keep in mind that this is one step closer to beating Cancer. I can do this!

Finally moving along!

Finally we're moving along! I saw the surgeon this morning for a consult for my portacath placement.  Whew, seems complicated but here I go! I have the placement on Wednesday.  I'll be in the OR, under conscious sedation and such. I have looked up pictures of portacaths, and I have to say ewww... You can see it under the skin and it sticks out a bit.  Ah well. It is what it is I suppose. I have to admit I am kinda nervous for all of this.  Not just the surgery itself, but of course possible complications and the fact that after the surgery all the rest of this will begin.  I see my Oncologist next Monday and then [finally] begin this... um, journey? 

I've been in relatively good spirits over the last couple of days. My fiance and I saw my therapist yesterday, and that helped a lot.  I have a fantastic therapist. 

I'm still kind of bouncing back and forth emotionally, not so much anger but quite a bit of disbelief.  When I was filling out paperwork at the doctor's office this morning, I had to check under my current history "Cancer".  It felt weird. 

I have cancer.

I will be a cancer survivor.

This is not something I thought I'd face, especially so young.

My friend texted me this morning and she said they are learning about lymphoma in her nursing class.  She said "Jess, it's apparently very very rare that it's diagnosed in stage 1. You are a miracle." 

I had heard through support forums that diagnosis in stage 1 is almost unheard of.  Don't get me wrong, I am incredibly grateful, but it's so surreal. The whole thing.  The fact that that measly endoscopy, looking for something else, caught something BIG... and much sooner than it should have been caught. AND, that the doc wasn't even going to do the endoscopy, but at the urging of my primary care physician, he went ahead and did it at the same time as the colonoscopy.  That's pretty freaking wild, if you ask me! 

So here we go. This has been the LONGEST three weeks of my life.  My fiance put it very well in therapy yesterday, she said "everything is moving SO fast, yet so slow, at the same time." Hah. That's an understatement.

That's where I'm at today. 

We'll see what tomorrow brings, but for today... I'm alright.

Another sleepless night

So, it's 1:30am on Friday night. We went out with a couple of our friends and had a blast.  We designated the night to "no cancer talk", and it was wonderful.

Of course, like always, I have a hard time winding down after going out.  So here I am 1:30am on a Friday night, wide awake.

and... it's still there.  The big C.  It's always still there. 

That's ok. I may not like it, but it's ok. I am trying to work at acceptance.  I bounce back and forth a lot between anger, grief, sadness, acceptance, and so on and so forth.  I suppose that's normal. 

I have a good support system, which I am grateful for. 

We go and see my therapist on Sunday. She's fitting us in on her weekend.  That meant a lot to me.

Monday morning I have my appointment with the surgeon for my consult. Then they are putting in the portacath. 

then... begins treatments.

I just wish I was started already.  I know, I know soon enough. To be honest though, this in-between stuff is driving me nuts. 

I am having coffee with a friend tomorrow (technically today.) I am looking forward to seeing her. Tomorrow night we are going out again with some friends, which will be nice. 

It seems as though a lot of what's going on lately is either emotional support - or distraction. Again, I suppose normal for where we are in the process. 

I have a feeling i'll be up for a while though. So NOT tired.

Happy Thanksgiving

I have much to be grateful for on this Thanksgiving day. My fiance and I are spending it with my mom, who just moved back from Florida. I cannot remember the last time I spent Thanksgiving with her <3 

So in lieu of Thanksgiving, I am writing a short gratitude list.

Things I am thankful for this year:

• My diagnosis. Even though I have Cancer, it's the best diagnosis we could have gotten.
• Life! 
• My amazing treatment team
• My fiance
• My family and friends
• Warm cuddly blankets 
• My animals 

It would be all too easy to get wrapped up in the downers of why this Holiday season isn't quite the same. I refuse to do that! The Holiday season is my favorite time of year, and I am set on enjoying every morsel I can get out of it! 

Happy Thanksgiving!!!

The Emotional Rollercoaster that is Cancer

Up.Down.Up.Down.Up.Down. My emotions are on a rollercoaster ride. It really shocks me, both how one can have so many fluctuations in emotion, AND how one can handle such fluctuations in emotion and be o.k. 

This morning I was at peace. I was grateful. Now, just a few hours later I am feeling that depressive pull at my heartstrings.  I am still grateful, but my eyes want to close out all of this. Too bad when I close my eyes it's all still there. 

I find it strange how one can feel strong and weak at the same time.  That's exactly the place I'm at now.

I don't feel particularly drawn one way or the other, nor do I feel particularly bad... or particularly good. 

It was supposed to be simple...

I am sitting at Starbucks having quality time with myself, my journal, and my laptop. I am going to write my primary care physician a thank you letter. Unbeknownst to me, at the time, my GI doctor was only going to do the colonoscopy, and not the endoscopy. My primary care doc was the one who pressed the endoscopy.  Without that endoscopy they would not have found the lymphoma. Without that endoscopy, I would not have been diagnosed as early as I was, and things could potentially be much much worse. 

It was supposed to be simple. I was expecting to come out of it, the GI doc saying I fucked up my esophogus from 12 years of being Bulimic.  That I could handle. 

Cancer. 

Lymphoma.

It is with a grateful heart I sit down and write this letter to my primary care doc.  Yet, how do you adequately say 'thank you' for something of that magnitude?

So, sitting at Starbucks having quality time with my pumpkin spice latte on this cold cold winter morning I begin to write...

Results are in...

We were so nervous going to the Oncologist. A million things bouncing through our brains. It was a relief though, knowing we'd get some answers - and some direction.

The appointment could not have gone better.  The only thing that could have been better was for the doctor to say "ooops, we made a mistake... you actually don't have Cancer" 

So. The cancer is stage 1.  My bone marrow was clear, and there is no Cancer anywhere else in my body.

When we heard the new, my fiance and dad started crying. Surprisingly I didn't. 

The gameplan:

• I have an appointment with the surgeon (who will be putting in my portacath) on Dec 2nd.
• Somewhere between December 2nd and December 9th I will be having day surgery for the portacath placement
• I see the Oncologist on December 9th 
• Thereafter I will begin Rituxan infusions.

The first infusion will last 6 hours. After that I will be getting infusions once a week for 8 weeks. Thereafter I will get another scope to see if the cancer is responding.  After that more Rituxan infusions.  Then, hopefully I will be in remission.  The remission rate after all of that is an astounding 95%. 

I'm trying to stay in the moment, not think about the what if's... "what if I don't go into remission"... "what if it comes back..." "what if it spreads..." and so on and so forth.

Stay in the moment... be mindful of where I'm at in the here and now. 

The news was good.  The best we could have hoped for. 

It'll be a long road, but for now I am thankful. I am grateful.  I got this. Kicking Cancer's @$$ !