Dr. Von Hoff

I can’t, for the life of me, always remember things lately.  Apparently, this is what they call chemo brain.  For instance, right now I feel as if I have blogged about chemo brain before, but I’m uncertain if this is true or not.  Maybe I just posted about it once on Facebook.  In either case, chemo brain is real; science says so.  A recent study of women undergoing breast cancer treatment found that a majority of them suffer from, what we in the oncology world call, “chemo brain.”  Real technical, aren’t we?  Chemo brain happens during chemotherapy (obviously) and causes patients to have a foggy memory.  I’ve found it slows down my ability to find the word I want, has affected my memory and often time many other skills I took for granted.  It isn’t as if they skills or memories are gone, but my recall is much slower.  It’s not a pleasant feeling and I am very thankful that it is, according to survivors, short-lived.

While this isn’t really the point of the blog today, I did want to express that the reason I simply seem to refer to some doctors by initials or not at all is that I cannot remember how to spell their names or just cannot remember them.  For instance, Dr. Brooks has, for several weeks, told me the names of the two oncologists he would like me to potentially see for the research treatments.  One is Dr. M, lovingly referred to by Malika as Dr. Manhamana.  No, not really his or her name, but what it sounds like when Dr. Brook rattles it off.  Dr. M works at the University of Arizona (or is it University Medical?) and is doing some sort of trial there.  I haven’t heard much about his or her trial; in fact, Dr. Brooks didn’t even mention him/her at my appointment yesterday.  I don’t know if I no longer qualify for whatever s/he is studying or not, but I take it from his question of whether or not I could make it to Phoenix once a week that he is leaning towards sending me to doctor number two.

It is this very doctor that I am writing about today.  His name is Dr. Daniel Von Hoff who works through TGEN in Scottsdale.  He has a clinic he runs on Mondays and sounds like an absolute God send when it comes to cancer research and treatments.  His primary area of study is pancreatic cancer and his goal is to either cure it by time he retires or put medical research ahead enough by then that it will be cured.  He believes that cancer will be a disease of the past in the next twenty-five to thirty years (wouldn’t that be nice?)  Where did I find all this information?  Google.  The article I read on this man made me cry!  If I had to see anyone other than Dr. Brooks, this sounds like the man!

If you are interested in reading about Dr. Von Hoff, you are welcome to read the same article I read here: http://www.azcentral.com/arizonarepublic/news/articles/2010/08/08/20100808valley-cancer-doctor.html 

Since I cannot spell Dr. M’s name, I haven’t found anything about him/her.  I’m looking forward to the new treatment bringing me to remission and I honestly believe that if Dr. Brooks can’t help me, Dr. Von Hoff can!  Something good is going to come of this, I just know it.

Also, I’d like to thank everyone for the kind words of support I received since my last blog.  I was nervous admitting to how I felt, not wanting to cause any waves in the pool.  Still, I promised to be as honest as I could (when will I finally get to that pro/con blog?!) and that includes making waves sometimes.  I found a ton of support among friends and family alike, which I appreciate.  This isn’t easy for me and it helps to know that I’m never alone.

Advertisements

Roller Coaster Ride

Today has been a bit of an emotional ride for me and I will apologize in advance for anything that doesn’t appear to make sense or might offend.  The intention is to do neither, but when running on emotions, sometimes things can no longer be controlled.  With the week I have ahead, I don’t want to skip blogging about today and give the feelings too much time to settle; it will not only ruin my writing, but I don’t really know when I will have the opportunity to take the time to write again.

This morning I woke and fully expected to be heading to chemotherapy.  As Friday was part of the Thanksgiving holiday at my oncologist’s office, they were closed and my appointment with him (and possible treatment) had been moved to today.  I loathe going to chemo; it’s really not the way I want to spend my day and the days following are usually rough.  Eleana, one of my best friends, is returning to Peru this week for just three days before heading to a job in another state.  I really didn’t want to miss out on getting to see her because I was sick.  My fingers were definitely crossed that for some reason there wouldn’t be a treatment today.

Dr. Brooks seemed reluctant to enter the room, which made me oddly nervous.  Looking back on it, I can’t help but laugh a little; it wasn’t as if he could give me any worse news than I have cancer.  He had a huge stack of papers in his hand, which turns out was part of my test results.  The reason he had been reluctant to join us, he said, was that he didn’t have one piece of the results due to some kind of paperwork flaw.  The final test was being done, but it would be another five to eight days before it was completed.   In the mean time, he did not want to do chemo today (yay!) so that once he had these results and could get me into either the study in Phoenix or the one at the University of Arizona, we could begin immediately.  His hope was that a new treatment would come within the next week or two.

Some of the less exciting news, however, was that the test results said my cancer should be responding to the treatments I am on.  Clearly, this test isn’t flawless, but it did give us a few things that might push my cancer into remission.  There were a few oral agents as well as IV ones left as options, but I still can’t seem to get over the fact that our best bets are the ones currently in use that aren’t working.  I can only hope one of the other ones work better…or else I’m not sure what our options will be.

Overall, I considered my appointment a win and celebrated with Malika at a ceramic painting store.  I was giddy with the knowledge that I would have two entire weeks of feeling great without chemotherapy (and ignoring the nagging thought that my cancer was getting some time to grow.)  In fact, my giddiness spilled onto Facebook, where I was about to post a second status celebrating my lack of chemotherapy when I spotted something of great interest to me (which was followed by a text from one of me nieces).  My eldest niece (via marriage) is having her first child.  It was as if someone had thrown ice water into my face.  Until now, most of the people on Facebook celebrating their pregnancies were distant friends (with the exception of my friend Candace.)  While it wasn’t easy to see tons of sonograms and countdowns to due dates, I tolerated it by my well trained avoidance.  I just skip their posts for the most part (again, with the exception of Candace).  It’s that easy.

But how do you skip your niece?  How can you not find a little bit of excitement and joy over the fact that you will be a great-aunt?

Um, apparently it’s slightly possible.  I love Marette and am so very happy for her, but as I said, it was as if someone threw ice cold water on me.  My mood did a complete turn about; I cried.  It’s been a long time since I have ever been so confused emotionally: I was happy for my niece (who I know wants this so badly) and yet I was jealous and heartbroken.  I feel as if everyone else is able to move on with their lives and I’m in suspended animation.  Milo and I can’t try to have a baby; we can’t even really plan for one soon.  We can’t adopt.  We can’t leave Arizona.  I have to stay right where I am, working where I am; until I’m in remission for long enough that they give me the green light to move forward.  I hate it.  The trapped feeling I get, the longing for what I am missing…it eats at me.  In cases like today, it also makes me feel like a horrible person.  I can’t just force the green dragon back into her box and paste a smile onto my face; I’m a horrible poker player that way.  I’m jealous.  I’m disappointed that Marette and I, who had talked about raising babies together, won’t get to do that.  I’m worried I’ll never get to achieve that dream, that having a family is slipping through my fingers.  In times like these, I simply want to wallow and be the jealous five-year-old I am behaving like.  Yet, while I know it will sting, I am going to do my best and push that aside…and do some major spoiling of my first great-niece or nephew!

(Oh, and for those interested, I am apparently not alone.  While the following article is about women who have lost babies via miscarriage or infant death, it is something the women in one of my cancer groups agree applies to all of us: http://facesofloss.com/real-advice/dealing-with-pregnant-friends-babies)

Happy Thanksgiving

Last week, my chemotherapy session was slightly overshadowed (ha!) by the drama of the evening.  It isn’t as if posting about chemo is the highlight of my day, but usually I like to use this blog to keep everyone informed on the goings on of my cancer.  Trouble is, meeting with Dr. Brooks last week didn’t really provide me with much to talk about.  I went in with a set list of questions (and still managed to forget one!) and the hope that we would finally have the second biopsy results.  No results; nada.  He had promised to call and I spent the early part of the week praying that he’d have something for me before my visit on the twenty-ninth.  No call.  In other words, I am exactly where I was before the biopsy: without answers.  I don’t know what the newest treatment will be or when we will start it…

Which leads me to what we did learn.  I had asked about the break between chemo treatments and whether that would be ample time to do an egg harvest.  Dr. Brooks had mentioned a six-week down time between my current regime and my new one, whenever that starts.  I thought that sounded like a decent window to preserve my fertility options.  I was apparently wrong.  Dr. H spoke with Dr. Brooks and told him I needed to be off chemo for at least three months before he’d do an egg harvest.  So, we did the Lupron shot, are crossing our fingers and holding our breaths.  If that shot doesn’t work, and the insurance doesn’t cover it, we might just have to kiss a future of biological children goodbye. 

I also asked about some random bruises that had been appearing on my abdomen: three of them about the size of a dime each.  Dr. Brooks wasn’t concerned and said I would bruise more easily, so don’t fret (ha again!)  As for my request to return to floor nursing and my soccer team, he told me I would have to wait until we started the new treatments and he was what their toll was on me.  If I felt like I had more energy, he’d happily allow me to return to both.  If I was still as exhausted and sick, he’d have to keep me off the unit and my soccer team.  I’m starting to feel like I’m in suspended animation since so much rests on what that biopsy says.  Here’s hoping the twenty-ninth offers some sort of answers!

The rest of the appointment had been pretty much standard.  Chemo, hanging out with Malika (who is becoming a pro at being a chemo buddy!) and then heading home to let whatever happens, happen.  Unfortunately, I pushed myself a little hard on Saturday and attempted to go to the mall and to a friend’s for dinner and movies.  I was so incredibly sick by time we arrived home that I was crying.  Nothing stayed down and I spent most of Sunday regretting my decision to push so hard.  I’ve definitely learned that I have limits and need to respect them right now.

Yet, as this thanksgiving holiday comes and goes, I have much for which to give thanks.  My husband is insanely awesome and has been by my side through all of this.  He’s held back my hair while praying to the gods of porcelain, caressed my back when there was no hair to hold, cooked, cleaned and just been super supportive of everything.  I could not have asked for a better partner in life, especially not at a time like this.  I am also thankful for the good friends and family that have proven I am not totally alone.  Malika has been a God-send and I can’t possibly list all the people who have gotten me through with a kind word either online, on the phone or even via snail mail!  I feel so incredibly loved. 

I can also be thankful that I still seem to have my hair, even if it falls out in what I think are crazy large amounts.  I’ve stabilized my weight, for which I am not thankful but Dr. Brooks seems to appreciate.  Mostly, I tolerate foods (though I didn’t do so well on Thanksgiving day or today for that matter…large amounts or fatty foods appear to be the worst culprits!)  I still have a job, even if I am short on hours; though, they did just give me a pay raise (wahoo!)  We have a lovely, safe home that is clean most of the time (he he) and Arizona winters can’t be complained about.

What I am especially thankful for, however, is that Milo and I have stopped using excuses not to do things.  For instance, this Thanksgiving we spent the holiday tucked away at Susan’s house visiting with her and her three youngest children.  I have had such an amazing time with them; we’ve gone to the movies, played games and took a horse-drawn carriage ride (bucket list item fifty complete!) around Kansas City to see the Christmas lights.  It was so wonderful to spend time with his family, which I always enjoy.  In fact, it solidified both our desires to move closer to Susan and the kids…

Now, we just wait for the cancer to evacuate the premises so we can do just that.

Oh No You Didn’t…

One of the things cancer seems to do is make you less…think-y.  I know that’s not exactly a word, but it is what I feel sometimes.  You are more willing to try things you hadn’t before, because, well you could die anyway why be afraid of it.  We’re going to Disneyland sometime in the near future and I plan to get on a roller coaster that flips for the very first time.  Why?  Because I am no longer afraid I might fall out of the seat and die.  I have nothing to lose.  I am more gutsy and willing to do things that are slightly crazier, even if I do draw the line at illegal things and completely retarded things (no garbage can lid sleds in traffic for me, folks!)

Today, I allowed the cancer, the Ativan and my desire to have a dear friend back lead me to one of the more thoughtless moves in my life.  I called it divine intervention when a car accident routed me past my friend Belle’s house.  She and I had been close, almost sister like according to her.  In fact, she had been in my wedding and wanted to be the maid-of-honor; that is how close we were.  She had slept over at times, we planned trips together…heck, I swear I have a hundred pictures of us just being dorks and having fun.  Malika, who was my designated driver post-chemo today, thought it was a brilliant idea to finally get some kind of closure with Belle, who I have been missing terribly for the last few months.  Belle was good at making me laugh and when I look at wedding photographs I see her and wonder what happened, why she stopped talking to the entire group of us despite giving us excuses like being busy and disappearing.  She has that habit, after all; she would let us know she was busy and see us after her semester was done at school…and then she would follow through only one time out of about ten.  Reliability wasn’t her thing, so we never assumed that she stopped talking to us because she didn’t want to be friends.  We (the entire group of us that know and hang out with Belle) really just believe she was in her pattern of hiding under a rock and would turn up eventually.

We were sorely mistaken.

After not hearing from Belle since last year (a text that said “I’m on my way; will be 20 late) and never again, I was concerned and wanted to make sure she hadn’t been in some tragic accident.  As I said, we were rerouted right past her house and I thought, with Malika’s gentle prodding, “Why the hell not?”  We arrived at her house to find no one home and some Christmas lights on.  I figured, after two minutes, that no one was home and started to pen a letter telling her that the group of us were very concerned about her, missed her and hoped she would at least let us know once and for all why she wasn’t speaking to anyone anymore.  If she didn’t want to be friends, we just needed her to say so because otherwise we assumed she was just busy and doing her living under the rock thing where she’d turn up when things slowed down like always.

Enter her mother.

Apparently, her mom and brother had been home at the time…sort of.  The brother was home and the mom had been out for a walk.  As I finished writing the letter and was getting ready to hand it to the brother, when her mom appeared.  She said, “What’s going on?”

“We were just stopping by to see Belle and make sure she was okay.  She’s stopped talking to everyone and we’ve been really worried because the last we heard she would call when things slowed down…”

And this is where things got interesting.  Her mother lit into us and said the entire group of us was stalkers.  How dare we not allow her daughter not speak to us; she has that right.  They’ve saved all the texts we sent (like the 10 over the course of a year wishing her a happy birthday and asking if she was okay or wanted to get lunch?)  If we called or texted ever again, she’d take it to the police and have us all arrested for stalking (because apparently calling and texting the woman that had been so close she was in your wedding party is now stalking…even if no one ever told you they didn’t want anything to do with you and weren’t just too busy to talk!)  She demanded we all stop contacting her that instant.  I said fine and stood up to leave when she said I could leave the letter I wrote.  Clearly, I thought she was freaking insane at this point (did she not just threaten to have me arrested?!) and didn’t leave the letter.  I apologized for wasting her time.

But those crazy people, they don’t just let things drop.  She got into Malika’s face for a text she wrote telling Belle that she was a crappy person for not even caring about any of her old friends; friends that were still silly enough to check in on her despite the abandonment.  Malika didn’t seem fazed; she told her mother she honestly believed Belle was a shitty person.

We started to leave without another word when the mother called out, “Oh, I see you got sprung out of the hospital. How is that cancer doing?”

That is when I realized that she was accusing me of faking cancer for sympathy! Clearly, I have to be faking the two MRIs, two CT scans, the PET scan, two biopsies and all the symptoms because I have Munchausen syndrome and am doing this to myself.  I am that in need of people doting over me and whatever….(insert rolling of eyes)

I was so shocked, and probably still a little affected by the IV ativan, so I didn’t have time to respond before Malika told me to just get in the car because clearly this is where Belle got her histrionics.  I dropped into the car, shocked, while the still clearly crazy mother ran into the street to get Malika’s license plate number.  It was about two or three miles before it kicked in that the woman had insulted me and I had wished I had flashed her my port-a-cath site so I could be like “Would you like to see where they dump toxins into me three times a month?”  Then again, I’m also really glad I didn’t react because I left being the better person.  And I found the closure I needed to let that person go from my life finally.  It hurts to look at wedding pictures and know that woman will never be a part of my life again, but in the long run it is much healthier not to be in that kind of relationship.

For the record, still not a stalker.  The worst part is, however, I now wonder how acceptable it is to contact friends and be worried if they aren’t responding.  At what point should I take the message and just drop it, even if they were people I considered family?  Should I even bother contacting anyone or just let them come to me from now on? (Oh how that would play into her psychotic belief that I am just out for attention!)

To top off this fun afternoon, I came home to relax and Malika noticed that there is part of my ceiling paint that appears to be bubbling.  I thought it was a shadow from the lamp being right below the plaque hanging on the wall.  After a little monkey act of me climbing on the couch, I found the paint is slightly damp and bubbled quite a bit.  I wouldn’t be surprised if the exceedingly cold patch contains more than a little mold as it has been growing during the rains of the last few weeks (according to the fine tuned visual skills of Malika who sees it more from her angle than I do).  Of course, the front office is closed, but I did call and play my cancer card when alerting them to the potential of mold growing in my wall.

Can tomorrow be better, please?

Please Help Support My Cause

Hi everyone who has been kind enough to read!

Today I’m posting something a little fast before I get into the meat of my cancer craziness again.  I’m going to ask you to support a cause I care a lot about, something I discovered on Facebook that has actually aided me so very much.  The cause: I2Y Cancer AKA I’m Too Young! Cancer Organization.  The group supports young adults (ages 14 to 40) who have been diagnosed with cancer and feel alone.  It is, as I have mentioned in the past, a very lonely disease.  People can try to understand, even those who have had cancer before have some clue, but it’s different for everyone.  Things I worry about are not the same things that someone older than me might have as the same concern.  This place unites me with those that have the same worries and provides support to all of us: those that are struggling now and those who have made it past the treatment phase.

Yearly, they have a cancer summit.  This year it takes place in Vegas and will have conferences where cancer patients, survivors and caregivers can join together and learn techniques to get through the loneliness and deal with the issues at hand.  It gives us a chance to make new friends that do understand exactly what we are going through.

My goal: raise $5000.  If I can do this, I will not only get to attend the conference on a scholarship, but could also walk away with a gift pack that includes an iPad (which is awfully handy when you are sitting at chemo for 4 hour stints!).  The money supports all the projects I2Y supports, including efforts to extend research into cancer and its affects on those my age (because recently scientists realized that they have no idea what the long term effects are on the young adults with cancer or how to even treat young adult cancers sometimes!)  It can not only save a life, but it can also save some sanity.

Some facts:

  • Every 8 minutes, a young adult is diagnosed with cancer.
  • Every hour, a young adult loses the battle with cancer.
  • 70,000 Americans between 15-39 are diagnosed with cancer each year.

To donate to my specific cause (and help me raise $5000 by Feb 28, 2012), visit: www.crowdrise.com/omg2012/fundraiser/JanineD23

For more information on I2Y, visit their site here.

Chock-full of Awesome

Thursday morning I woke for my test feeling a little weird about the dream I had.  In it, a little girl was sitting on someone’s lap but her ice blue eyes were locked on me as she talked a mile a minute to someone else.  Her hair was pure white and short, her cheeks chubby; she reminded me of an angel.  By time I had arrived at the hospital for lab work and my biopsy, I was calmer about it all.  I felt at peace; apparently, I am getting quite used to being a lab rat.  I wasn’t even the slightest bit nervous about the biopsy (well, not at the beginning).  The only thing I felt, besides cold, was a longing for my husband.  He was working, but I wanted him to be there with me like he was the very first day.

The same nurse from the last biopsy was there and she was willing to access my port-a-cath instead of start an IV.  She definitely looked a little nervous, which didn’t inspire much confidence, and admitted that it wasn’t often she accessed a port anymore.  Once it was done, however, we had a working line to pass meds through and the pain wasn’t so bad. I was glad there wouldn’t be any possibility of IV issues to keep me from my medications like the first biopsy.

The nerves kicked in when I met the doctor, Dr. B (since I can’t recall his exact name).  He seemed nice enough, until he began the spiel he gives patients about side effects.  Most of them I already knew: bleeding, infection, puncture of surrounding organs.  However, he just went on and on about how it was possible, but unlikely, that they would occur.  In case I didn’t understand, he repeated himself at least six times and seemed shocked when I asked about the foam to prevent bleeding.  This started a fresh round of reminding me how likely bleeding is and how he prefers entering the liver through good, living cells because they are quicker to heal.  As no one had said any part of my liver was dead, this surprised me slightly.  I know tumors can kill off living tissue, but since my liver function tests all came back fine I just assumed my liver was…well, functioning.  Now, this Dr. B had me questioning that assumption.

He also warned that sometimes he had to “gently twist” people’s arms to get them to continue with the biopsy as they would change their mind when he was ready to begin.  It wasn’t until later that I understand why people would have concerns and not want him to continue.

After he left, I was alone for a while before the nurse took me to the CT room where the ultrasound and CT were ready to lead the biopsy.  The ultrasound tech this time was so much nicer than last time.  When she found the tumor, she showed me how it was the darker spot in my liver and she pointed out other organs as she moved.  I felt really confident about having her at my bedside and since I knew the nurse I thought this was going to go well.  A woman named Sharon joined us and introduced herself as Dr. B’s assistant.  This was a bit of a twist; the last interventional radiologist last time worked alone.  I was missing her a lot by this point.

Dr. B eventually joined us and took control of the ultrasound machine to see if he could find the tumor.  I joked with him that it would be rather hard to miss; after all, it is the size of an orange.  This man had no sense of humor as he grumped and said, “Well, it has gotten so big it is hard to distinguish good liver from cancer tissue!”  I teared up at that; last I knew the tumor was the same exact size it had been during the first MRI.  If it was growing, why are we bothering with chemo and being sick three weeks a month?  What was I putting myself through all of this for?

He didn’t get any more impressive when he started complaining that he was not getting the right angle and found the tumor “far too close” to my gallbladder to go in around the area they used last time.  He insisted he would nick my gallbladder that way and I would end up in surgery.  This really didn’t assure me that I could trust the man about to shove a sharp needle through my liver to pull out fragments of a tumor.  Dr. B asked the tech to show him where she was able to find the tumor, and she did quite quickly only to be rebuked because that would limit the angle he would be able to go in.  “I want to go in straight!” he insisted and decided that the ultrasound was out and we’d have to do the biopsy via CT machine.  Because that’s what a cancer patient needs, a doctor that freaks her out and more radiation.  This is where I understand people not wanting this dude touching them.

Determined as I was to get the sample, I reluctantly climbed onto the CT table to have them rescan my abdomen.  If the nurse and Sharon hadn’t stayed with me and talked so calmly, I am not sure I would have been as comfortable.  The nurse finally pushed some drugs to help me relax during the CT and the scan began.  Once again, this CT machine talked and would tell me when and how to breathe.  The medication must have started to kick in because at one point I told the CT machine it was being awfully bossy and then began to giggle.  I must be amusing when truly stoned.

After they had the landmarks they needed, I was given a bit more drugs (a total of 75mcg of fentanyl and 2 of Versed), but was still conscious enough to remember everything.  I didn’t, however, hurt near as badly as last time.  I believe he numbed part of my liver, which burned, but I was able to tolerate the test without tears.  Mostly, I just laid back and let him work.

Before long, they were taking me down the hall to recovery.  On the way, I mentioned to the nurse what he had said about the tumor being larger.  I asked, if she had time, could she go back and look at my scans and let me know if that were true.  She didn’t hesitate to say yes and promised she’d look into it.  I was really terrified that the abdominal pains I have been suffering from were the tumors growing and spreading while we were completely unaware.

I didn’t sleep at all in recovery and was able to have a clear liquid lunch (yum, broth and juice!)  Sharon came in to see me long before Dr. B did.  She had a wounded puppy look on her face and said, “I was told that you had concerns your tumor had grown and I didn’t want you leaving here defeated.  I have the pictures from your last MRI and today’s CT with the measurements on them.  Remember, an MRI is more detailed so we’ll see boundaries more clearly, but from what I saw your tumor is unchanged.”  She showed me the photos and the tumor shows no growth.  I nearly cried from relief and I was so thankful she was willing to go above and beyond to ease my concerns.

The next little drama occurred when my bladder told me it was clearly time to use the bathroom.  My recovery nurse took this time to inform me that I was on bed rest until two.  I really didn’t want to use a bedpan.  I hate bedpans just from the fact that you have to sit on some little plastic bowl and then wait for someone else to help you.  I just want to pee in peace dang it!  No luck, however, as my nurse wouldn’t budge and gave me the options of holding it or using the bed pan.  Holding it required my bladder to be fine for two more hours; so not an option.  And thus, I had my first experience peeing on a bedpan.  This feat is nearly impossible.  It took me five minutes to find a position I could urinate in and another few to convince myself that the sharp plastic digging into my legs and butt was fine.  Even after, I felt like I hadn’t completely relieved my bladder –because really, the second the urine hits your flesh since you are sitting in your waste, you don’t really want to keep going.  To my patients, I am so, so very sorry you ever have to experience this.  I promise I will redesign the damn bedpan for comfort sake!

By time Dr. B did finally get around to checking on me, I was just ready to get out of there.  It was a good thing, too, since it was almost two and I could finally get up, stretch my legs and use the real bathroom.  I was ready to go home and get some actual solid food into my stomach and was really glad that pain was minimal.  The biggest nuisance happened to be the itching around my port-a-cath; I might be allergic to the glue on the tape.

The rest of the day was uneventful and Friday was a standard chemo day.  Dr. Brooks met with us this week, which was a pleasant surprise.  Milo, Malika and I entertained his medical assistant and him with our energy and constant jabbering.  Dr. Brooks told us it would be about two weeks before we knew anything from my biopsy, but that we would certainly continue with chemo until then so we wouldn’t lose ground against the tumor (who might need some dark, evil name.)  Once the results are back, he is going to forward the information to some other physicians and get their feedback on trials and medications we might want to use.  I’m determined that something good will come from this second biopsy, especially after the fiasco it was.  I recounted this story to Dr. Brooks, who is going to write to someone at the hospital about how poor the other doctor’s bedside manner was, and I told him that Dr. B had me exceedingly concerned for my safety as well as my overall condition.  In fact, he was “chock-full of awesome!” (Said quite sarcastically, of course).  Dr. Brooks seemed to really appreciate my humor, energy and outlook.  He said it must be incredibly difficult for people to believe I am sick, which I get a lot.

I don’t know what’s keeping me going, maybe it is the kind words of support in cards and emails, the calls and the love I get from everyone.  Maybe it’s just me being me.  Either way, I appreciate the team of people around me who care so much and are behind me.  I do read the cards, even if I don’t get time to reply to them all so please don’t stop sending notes and emails.  I love getting them and they cheer me up when I am down.  The comments on the blog are also appreciated, as are the ones on my Facebook wall.  I’m going to keep pushing through and will inform you as we progress.   Let me know if there are any questions I’m not answering; I’ll be happy to respond.  I’m seriously honest, as if you couldn’t tell…or as Dr. Brooks put it “a loud backseat driver who has no fear of saying what’s on her mind.”

The Hits Just Keep on Coming

God has a sense of humor.  I know this for a fact as right now He is laughing wildly and mostly at my expense.  Earlier this week I decided I would start working nine hour shifts so I wouldn’t have to depend as much on my PTO to make my thirty-six hours.  I could earn the amount I would on the floor and start building back up the PTO I used in case another emergency arose.  Despite really suffering from nausea and fatigue on Monday, the idea was sound even if I had to have a biopsy on Thursday.  This week might not work out without PTO, but next week would…

Or, they would throw me a curve ball.

The hospital census is down –and by down I mean we have one-third of the beds in the hospital full.  Because our numbers are way down, we need to cut back somewhere.  Neuro is closing, which means my normal co-workers will be forced to nurse on other units and our staff will rotate and take turns being on-call or canceled.  For me, who isn’t nursing, this means that my hours are being cut.  I am losing twelve hours a week, which is one third of my pay a month.  That, for the record, is a lot of money.  Budgets will need to be tightened while medical bills from my last MRI and my biopsy tomorrow will be rolling in.  Just when I thought things were finally under control, God laughed.

He’s awesome that way.

On a non-financial note, I really don’t want to go to the biopsy or chemo.  I’m going, don’t freak out, but I don’t want to.  I’m just done being treated like a Guinea pig.  Let’s see if this chemical will work…nope, oh sorry about that hair loss.  How about this medication?  No…huh.  Maybe the next one.

I just hate being sick all the time.  I know I’ve said all of this before, but I don’t know if I can even express how frustrating it is.  I’m poked and probed, chemicals are dumped into me, my usual escapes have been taken away and I’m forced to abide by someone else’s rules.  And have I mentioned that God is apparently getting a huge kick out of this the entire time?  I really just want to run away and forget for a while that I have cancer, except I can’t because I can’t afford to run away.  If I could afford to, I’d have to be back for chemo and more tests anyway.  Or God would just throw me another curve ball.

Hear that snort?  That was Him agreeing.