Luckily, thankfully, my brother is my exact bone marrow match, if it were to ever come to that.  But so many people aren’t as lucky as I am.  I love this parody video.  It’s worth the 3 minutes to watch!

Fluctuat nec mergitur translates to “She was tossed by the waves but she did not sink”.  It is a french saying with navel ties as well.  I saw this and thought how appropriate.  Life tends to toss things at us all the time.  Like being in the ocean with absolutely no control.  You either roll with the waves or fight against them; which likely to result in drowning.  I am currently in a sea of fucking cancer.  I want a different beach/ocean.

Cancer in 20’s

I may not be in my 20’s but I definitely feel although this nailed a lot of the guilt on the head.

Biopsy results came back and I am still in remission.   This is amazing news and puts my mind at ease.  I didn’t think I would get “scanxiety” ever since I try not to really think about it.  Whatever comes will come.  There is literally nothing I can do about it.  But this time around it feels different.  I tried not to give it power over my thoughts but it kept creeping in. I guess it’s hard not.  The very thought of having to start over or go through another intense round of chemo is just mind boggling.  But the weight has been lifted, well at least for another six months, until the next bone marrow biopsy.  I finally get it and it’s the worst.  A celebration of a little victory.

Blood Cancer Awareness Month

So much love going out to all those going through treatment or have gone through and made it to the other side.  It’s not the easiest or quickest road to take and there are many bumps, twists and turns along the way.  Only those that have been caregivers or patients will ever really understand how complicated it can be when your own body rejects you.  We get one month for awareness for something that takes years or decades to treat.  Here’s to us!

On a great side note, only 5 more LP’s with IT chemo left.  I can’t fucking wait until these dumb things are over with.  FUCK.

I haven’t felt much like sharing lately.  I am not sure why.  I feel as though my complaints, valid, are just that.  Complaints.  Nothing much more than bitching, but I guess that’s nothing out of the ordinary for anyone really.  I feel as though I haven’t slept in over six months now.  Walking and living much of my life in a distracted haze.  Going through the motions, but nothing much more than that.  I don’t want to feel, anything really.  I would much rather be numb.  Lack of sleep is starting to take it’s toll.

I realized it has been a while since I have posted.  I am still dealing with this damned Dex.  Steroids suck.  Met with my Neurologist this past week and we are going to dose reduce my anti-seizure meds but not completely come off of them until I am done with my cancer treatment.  We all agreed this is probably the safest way to go about this with the lowest risk of another possible seizure.  That brain is a fickle and sensitive creature.  I would love to come off of one more medication but I understand.  Plus I already and the cancer chick at work and don’t really want to have to wear a helmet as well.  Not that they would, I think that is more for epilepsy but still.  Probably would be a good thing if I don’t have one at work and freak everyone out.  Other than that news, it’s pretty much status quo for the time being medically speaking.

I did just get back from Phoenix, Arizona over July, 4^th weekend for a work thing.  It was of course hot and steamy but overall a good time.  I was nervous to see people I have never met before in my new state of being but for the most part that anxiety wasn’t as bad as anticipated.  Plus the Ativan helps.  Haha. God that shit is amazing.

Bitch session for the day.  I hate steroids week.  It just sucks. I can’t sleep, I feel like a bloated whale and it just fucks up my system so badly.  I am a walking sausage right now.  Fuck you Dex.  You are an asshole.  Here is why-

What are the possible side effects of dexamethasone?

Get emergency medical help if you have any of thesesigns of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat.

Call your doctor at once if you have a serious side effect such as:

• problems with your vision;
• swelling, rapid weight gain, feeling short of breath;
• severe depression, unusual thoughts or behavior, seizure (convulsions);
• bloody or tarry stools, coughing up blood;
• pancreatitis (severe pain in your upper stomach spreading to your back, nausea and vomiting, fast heart rate);
• low potassium (confusion, uneven heart rate, extreme thirst, increased urination, leg discomfort, muscle weakness or limp feeling); or
• dangerously high blood pressure (severe headache, blurred vision, buzzing in your ears, anxiety, confusion, chest pain, shortness of breath, uneven heartbeats, seizure).

Less serious side effects may include:

• sleep problems (insomnia), mood changes;
• acne, dry skin, thinning skin, bruising or discoloration;
• slow wound healing;
• increased sweating;
• headache, dizziness, spinning sensation;
• nausea, stomach pain, bloating;
• muscle weakness; or
• changes in the shape or location of body fat (especially in your arms, legs, face, neck, breasts, and waist).

This is not a complete list of side effects and others may occur. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

It also, doesn’t mention the night sweats and constipation(could also be the chemo).  Go away Dex; you are not my friend.

I came across this quote by Gilda Radner, who passed away from ovarian cancer.

“The goal is to live a full, productive life even with all that ambiguity. No matter what happens, whether the cancer never flares up again or whether you die, the important thing is that the days that you have had you will have lived.”

Just when I start to feel okay or a slight bit normal, Chemo week comes up and takes me right back down.  It’s my 90% of the time feeling 10% healthy.  My new normal is just living with the uncomfortable feeling I have all the time.  Doctors just want to treat symptoms, not the overall well-being of the patient, which is understandably so.  Just frustrates me to no end.  I do love my team of doctors, I just feel like I am not being heard sometimes.  Okay, I am done.  That was my vent for the day.

Moving on…I am so lucky I was able to take my Dad to a Blackhawks playoff game.   He had a great time even though the game we went to, they lost.  Our seats were ridiculous.  Thank you, work.  I am glad I am able to have these opportunities with him to make him happy.  He deserves it.  This is the only picture he would let me take and I had to sneak it.

Blackhawks warming up before game.