Thursday, July 17, 2014

More information on the pain pump

LOL!  I just mistyped *pain pump* as *pain pimp*.....that made me giggle.


...after some discussions with my husband, my parents, and some friends, I came up with a list of about 20 or so questions for my pain dr, so that we could all better understand this pain pump and how it would affect me.  I thought it might help to have this information here, so that others who might be pondering the same scenario would have a better understanding of what this device entails.

As always, please don't take my information as the end-all-be-all.  This is not meant to replace conversations with your doctor regarding your specific condition or situation.  All of this information is specific to my situation, meaning that answers to the same questions might get a different answer from a different doctor or in a different situation.

There, I think I covered everything.  So, here goes.

One of the questions I had was regarding the medications available for use in the pump.  Dilaudid is the initial drug of choice for my situation, as I am already currently taking it orally, and it's working.  There are other medications that can be used if the dilaudid doesn't work, such as morphine and another drug that I can't remember the name of.  Good news is that, because the amount of medications that I would start out with is SO low (1/100th of my current dose), there is room to increase the amount of pain medication.  There is also a way for me to administer a bolus shot of medication (basically an addition shot of pain meds through the pain pump via a beeper-sized remote control I would carry with me at all times).  I can also use oral breakthrough medications if the pain level gets high enough.  The goal, however, would be to wean me off of the oral medications.

I asked if medical marijuana was an option to help control my pain, and it is.  I am going to start that conversation with my doctors, as both Levi and I are very interested in pursuing this as an option.  I don't know how this will all play out, but I will keep you updated.

Once I am fully healed, there will be no limitations on my activity.  However, during the 4-6 week healing process, my activities will be severely limited.  I won't be able to lift anything, including laundry or groceries (isn't that a shame?), do any activity that causes me to twist (i.e., vacuuming), or sleep on my stomach (which is fine - I'm a side sleeper anyways).

The unit and tubing *can* become dislodged, however, in all his years of doing this, he hasn't seen one.  There are two fail-safes for each connection to ensure this doesn't happen.  The procedure to reconnect anything would be an outpatient procedure.

I/we were concerned with how the medications are processed in the body, and whether there would be any potential damage to the liver and/or kidneys.  Because the doses are so small (again, it could be 1/100th of what I'm currently taking), the risk is fairly low.  However, my team is constantly checking me for that type of stuff, so any issues would be found and addressed before they became a problem.

I was concerned about whether this pump would restrict what chemotherapy options I have available to me.  This came up because my doctor specifically mentioned that Avastin wouldn't be an option until I was fully healed, because that chemotherapy inhibits the creation of blood vessels.  I asked if there were any other conflicts, and there aren't.  Since I'm allergic to Avastin, this is a moot point for me.

In my research, there are many references to a "trial period" with this device, wherein I would potentially stay in the hospital overnight and a temporary cath line would be inserted into my spine.  Medication would be delivered to the same area that and basically tested to see if that would be effective.  My doctor is willing to do this, on an outpatient basis, but his concern is that, if he gives me a certain low-ish dose to start with during this trial period, and (because it's too low) it's not effective, I could be unconvinced that this would work when, in full practice, it would work just fine with a slightly higher dose.  Made perfect sense to me.

This unit would not, in any way, hinder my ability to get MRIs, CT scans, etc.

In a traditional chemo pump, the catheter that extends into your neck can sometimes get a scab-like covering over the end of the cath, making it difficult (if not impossible) to delivery meds/chemo or to get blood return.  I asked if this could happen with the pain pump.  My dr said that it *can* happen, but that it takes a few years (4, he said) for this to happen, and he's never seen it occur.

I asked if he was the only dr onsite that can access the pain pump, refill my pain meds, etc.  He is not - his PA (whom I absolutely ADORE) is also trained to do this, although he would have to be involved in any changes to dosing or meds.

One of the concerns that I had was whether this procedure requires a flushout period for chemo or my current pain meds.  The good news is that it does not.  Whew.

The last questions was whether the body can reject this pain pump as a foreign entity and cause issues.  It can, but again, in all his experience, he has never seen it happen.

So, with that, I have a much better understanding of what this pain pump is, how it works, and how it will affect me.  I feel much more confident that, once I reach a point where this is an option, I can move ahead with this procedure with no questions.

The good news is that, with this slight increase in my meds (as of last Friday) I am feeling much better.  My pain is much more controlled, and I am feeling less overall pain, which means I am also taking less of my breakthrough medications.  This, my friends, is a good thing.

For now, I am going to stay the course on my current medications, pursue obtaining my medical marijuana card (it's legal here in AZ), and consider all of my options moving forward.

Let me know if you thought of any questions that I should ask my doctors about this pain pump.  I'm very interested to hear what your thoughts are.

Monday, July 14, 2014

Pain pump as an option - any feedback?

Well, my back pain hasn't been getting any better, and I'm struggling with trying to maintain my everyday level of activity.  We are tweaking the meds again, based on a conversation with the pain dr on Friday, but during that appt, he presented me with an option I had never really considered as an option until now.

He asked me to open my mind to considering an internal pain pump.  As you can imagine, I was shocked and scared that this is the next step we are looking at.  It's overwhelming to think about.

The unit itself is from Medtronic.  Here is a link to the information directly from the Medtronic website regarding what the pump is and how it works.  Basically, it is a unit about, oh, say 2-ish inches around and about half an inch thick that weighs about 16 ounces or so (it was heavier than I thought) that sits just under the skin in the abdomen.  Attached to that is a long tube (called a catheter) that the drs winds through the body and inserts into the intrathecal area of the spine (if I remember correctly, this is the same area they access when you have an epidural when you are having a baby).

Here's a picture.
Photo credits here and here

And, here's a picture of how it would potentially sit in my body.

Photo credit

I was really glad Levi was with me at this appointment - I don't know how I would have done if he hadn't been there to talk me through it all.  After the appt, we sat down for breakfast and started formulating a list of questions that we needed to get answers to before we can make a decision.  We also spoke with my parents to get their viewpoint and questions, and I did (as you can imagine) a bunch of research.

Today, I emailed a list of questions, probably 25 in all, to my care team, so that we can start to get a better picture of what this would really, truly entail.

On Friday, I was completely overwhelmed.  I don't know why, but I saw this as an end-of-life decision, one that somehow puts me into a different group of survivorship.  I can't really explain to you why I had these feelings, why I had such inexplicable fear about having this done.  I guess, in my mind, I always figured that there would always be another option of pain medication, or that somehow, we'd stumble onto the cause of the pain and therefore just be able to eliminate it.

Having this device implanted is a huge step, and, in my mind, a final decision.  I really can't explain it better than that.  I think that this, combined with the news a few weeks ago about my tumors growing in size and number, just hit me all at once.  It feels like I am somehow coming to the end, and I don't know why.  I feel like we are running out of options for chemotherapy, for pain management....and what happens when we are completely out of options to control everything.

I die.

Maybe that's it.  Maybe it's just that I see this as yet another "We are out of options so we'll try this to see if it helps" kind of discussion.  That's a scary place to be.

So, I'll ask you all.  Does anyone have experience with a pump of this kind?  I'd love to hear all sides - positive, negative, people who chose to use it, people who chose NOT to use it.  We want to hear all sides, so we can make an informed decision, and know that what we choose is the right decision.

Any help y'all can provide would be greatly appreciated.

Thursday, July 3, 2014

CT Scan results, and plan moving forward

I know I have been very bad at updating.  Truth is, there hasn't been much to update you on.  Which, I suppose, given my history, is a good thing.  :)

The only thing of note is that my CEA has been steadily increasing.  It had leveled out at 9 for a while (or close to it), and because of that, Dr. K. felt that it would be the opportune time to take me off the Xeloda (which was causing my platelets, whites and reds to tank a bit) and see how Erbitux alone would fare.  

Unfortunately, it didn't go as well as we had hoped.  My CEA has been on a slow, steady incline over the past 2 months, topping out this week at 15.7.  The good news is that it has been steady over the past two cycles....16 2 weeks ago, and 15.7 this week.  Small victory, but I'll take what I can get.

Per the plan, I had a CT scan this week, on Monday.  It was awful - the back pain has been increasing again, and although we switched my meds, it hasn't been enough to fully control the pain.  Therefore, I had to take double doses of my breakthrough meds (these are meds that are meant to help with spikes in the pain, where long-acting or ER meds are meant to bring the overall steady level of pain down), and a Valium.  No, I didn't drive myself home.  

CT results were on Tuesday, and they were pretty much what I was expecting.  The tumors in my lungs have grown, both in number and in size.  The two that the tech pointed out are:  one nodule went from 9mm - 12mm, and the other went from 1.2cm to 1.5cm.  Still small, but the fact that they grew, and that they grew in number is not a good sign.

The tumors in my liver appear to still be gone, which was a piece of good news.  The tumor in my peritonium (which is the lining of the abdomen) is still the same size, but the margins are more defined on the scan.  I'm not entirely sure what that means, but there you go.

The team wasn't excited about telling me this information, as you can well guess.  Dr. K. was pretty clear about letting me know that there aren't many options left for me, as far as chemotherapy goes.  We had three options that we talked about.

1) Continue my current regiment of Erbitux, but add Xeloda back in.  There are pros and cons to this.  The pro is that it has worked in the past, and it worked well.  The con is that it does have a negative effect on my bone marrow, and inhibits my platelets, my white blood cells, and my red blood cells.  Dr. K. made it very clear that using this method is, in his words, a stopgap measure.

2) Look at using Stivarga/Regorafenib, which is the only other FDA-approved chemotherapy drug left for me to try.  This is an option we have to seriously consider, but there are a lot of cons with this.  First, the method that this chemo works on in the body is a similar pathway to Avastin, which I had a massive allergic reaction to last year.  This drug also comes with a HUGE list of potential side effects...among them, fatigue, high blood pressure, elevated liver counts, low platelets, anemia, and hand/foot syndrome.

3) Clinical trials. This would obviously be dependent on what was open, what I qualified for, where they were located, etc.  There is nothing at CTCA currently, but there may be some things coming down the pike.  Additionally, if I do a clinical trial, I have to have what they call a 4-6 week washout period, which means I would have to be off of chemo for that long before I started a clinical trial.


As you can imagine, this appt with my team was not very happy and joyful.  It was pretty somber.  

The plan for right now is to go back to the Erbitux/Xeloda plan.  We are switching my Erbitux treatments to a weekly cycle, and I will be doing a week on/a week off with the Xeloda.  They are going to pull my labs on a weekly basis, to see how badly the Xeloda tanks my bone marrow, and make this a very fluid plan.  I will be getting Neupogen shots pretty regularly, to keep my numbers where they need to be.

As Dr. K. said, this is just a stopgap.  This can't be a permanent plan.  My system just isn't going to tolerate it long-term.  And, that scares the crap out of me.  I tolerate this so well - there aren't many side effects that I affect my everyday living.  And, the thought of moving to another, unknown-to-me drug is terrifying.

Then, there's the thought that this is the end of the line, chemotherapy wise.  That's a very scary thought.  What happens if I get through this treatment, it stops working, and the next drug doesn't work.  Do I just keep living life, knowing that I'm on borrowed time (which I honestly already feel like, but it will feel that much more....well, imminent).  Do I just sit around and wait to die?  That's kind of what I feel like I'm facing.  Choices that aren't great, options are decreasing, and I am sitting here, feeling like I'm waiting for the Grim Reaper to peek his ugly head around the corner and tell me, "It's time."

Please don't read this the wrong way - I'm not giving up.  More, it's just a stark realization that things aren't looking as good as we'd like them to be, and I am having to face some very serious issues.  I have started some conversations with friends about doing what we always said we'd do, but keep putting off for a variety of reasons.  I contacted some friends that are spread throughout the country - we keep talking about getting together, doing some wild and crazy things, but life keeps getting in the way.  I told them that I didn't want the next and/or last time I see them to be when I am on my deathbed.  We have started the process of making plans.

I guess what I'm saying is that I'm trying to take this information, process it, and use it to the best of my ability.  I do realize, now more than ever, that my time here is very finite.  I want to live until I'm 100, but in all honesty, I am going to be damned lucky to make it to 40.  Therefore, I need to stop saying, I want to do this someday.  I need to start doing that shit NOW!

Another thing that put this all into perspective is a friend was told she has 6 months to live.  She and I are the same age, same cancer, kids are similar ages (though hers are a bit younger), and we are both married.  She lives right around the corner from us.  We have been spending time with this wonderful family - I'll call her Jane.  Jane and I have had some very serious talks about how we want things to go, what we need to do to leave a legacy for our kids, etc.  It's disheartening and scary, but so nice to have someone to talk with about this who is in the same boat I am.

Isn't that an odd statement.

Anyway, between watching Jane go though her time, and me knowing that my time is limited - well, it helps push things I want to do to the front of my list.  I am not going to live the next (unknown) months/years in fear, living with regrets, wondering "what if I had done XYZ when I felt better".  I want to do that stuff now, when it means the most.

So, on that note, I am going to get off the computer, get my kids lunch, and spend some time with a friend this afternoon.  I am going to make my family chicken fried rice (Kevin's favorite meal), and I am going to hold my husband's hand as we fall asleep tonight.  I am going to tuck my kids into bed, kiss them on their cheeks, and huh them so tight that they complain about it....then, they hug me right back with the same intensity, which is amazing.

I am going to live the freaking HELL out of whatever time I have left on this earth.  I am not going to spend the rest of my life feeling sorry for myself, or asking why this had to happen to me, or wondering if I'll ever get to do the things I want to do the most.  I am going to teach my kids that, no matter what life throws at you, you can have a wonderful life and fit a lifetime of happiness into a short period of time.  I want to be the kind of person that others look to for inspiration as they move forward in their lives.  I want to be the person that people talk about long after I'm gone.

Wonder if I can make that happen.

Anywho....I'm off.  More later.  

Thursday, June 12, 2014

Short Update

Well, I am back.  I don't know how often I'll be blogging, as I don't really feel like there's much going on.  I suppose that's a good thing.

I'll start with now - I am feeling pretty good.  For the most part, I am just living life.  My back pain has kicked up again, and has been pretty bad.  I went in last week to meet with the pain dr, and we increased my meds, but it looks like I am going to have to switch to something different...I think my body has just built up a resistance to this particular drug.  I have an appt on June 23 to see the pain dr I do like (the other one and I don't exactly get along, hence the wait), so I'm very much looking forward to that.

I have been on my bi-weekly schedule of Erbitux, and everything seems to be going well.  My CEA was pretty stable at around 9 for a few weeks, but this past week, it jumped up to 13.4.  My dr seems to feel that that may have been due to the fact that two weeks prior, I had pneumonia, so we are staying the course for now, and if the number remains the same or goes back down, we'll continue as we are.  If the number goes back up again next Tuesday when labs are drawn, I will go back on Xeloda, which I am perfectly fine with.  I tolerate both very well, so I don't see any issues with that.

I had a bladder biopsy yesterday, to check for the source of some trace amounts of blood in my urine.  When they were running tests trying to diagnose the pneumonia, the found the blood, and all around, everyone just wants to be safe.  So, I spent yesterday in a very sleepy manner....the test itself was quick, and I was asleep, which helped.  I can't imagine doing that while being awake.  Today, I feel perfectly fine.  I should hear back from them early next week regarding the few biopsies they took.  I don't have any concerns - the dr was very reassuring that everything looked fine and that there was nothing to worry about.  Could be that that's what Dr. K told him to say, but for now, I'll take it.  :)

I'm trying to think back on what's happened since I last posted.  The family and I took a vacation to CA, but time is short right now, so I won't expound on that except to say that it was, hands down, the most amazing family vacation.   I could not have scripted a better time for us.  I promise I will post pictures soon.

As I said, time is short - Levi's on his way home and we have to head out to run some errands, but I will update more shortly.  Meantime, know that I appreciate your continued support, and I adore you all.  :)

Saturday, May 31, 2014

I am still here....

Sorry for the delay in posting.  I have been taking a kind of blog sabbatical; I needed a bit of a break from posting for a while.

I will update more in a bit, but for now, know that I am happy, healthy, and doing well.  The family is fine, and we are just enjoying life.

I promise I will post more soon.  :)

Monday, April 14, 2014

CT Results

Well, we got some amazing news last week.  

Are you ready for it?  

40% reduction in tumors.  


I am still in shock.  I was hoping, praying, for stability.  I would have been happy with that.  But this?  Above and beyond.

So, details.  I won't go into specifics.  Those are boring.  But, here's what we know.  The tumors on my liver and almost gone.  They were each over 1cm, and they are now, as the report says, barely visible.  Amazing.

The others have also gone down in size.  Some are barely visible.  Others have gone down significantly.  The one tumor on my left hand side that I could feel is down pretty significantly, too.  

I couldn't be happier.  It made this past weekend, which was Julia's 12th birthday, even that much more special.  And, our upcoming trip?  Yeah - it's going to be one hell of a celebration.  I cannot wait.  

So, while I feel like I should keep going on and on about this, I am going to leave it very short and simple.  Because, really.....what else can be said?  


Wednesday, April 9, 2014

Psychiatric Consult

Based on the downward emotional spiral I have been on for the past, let's say, 2 weeks, I knew that I needed help in getting ME back.  I spoke about this in my last post, which did help me to clarify things in my mind, and helped me to make some realizations.

As I've said in the past, blogging/journaling helps me enormously.  It allows me to get thoughts, ideas, concerns, fears, worries, etc. out of my head, and helps me to process them.  I actually went back yesterday and re-read my last post.  Believe it or not, I didn't remember writing a lot of it, which was kind of scary.  But, reading it again helped me to figure out what I needed to do.

I need professional help.  Therefore, I called CTCA to start the process.  They now have a psychiatrist on staff, and I was able to get in to see her yesterday for a consult.

Accepting that you need help and going in for it, talking about it with a stranger, trying to make sure you are honest but don't sound is tough.  But, I desperately need help.

I guess I'll start with what I've been noticing, and what prompted the phone call.

Lately, I have been feeling like I am not myself.  I can't concentrate on anything for more than a few minutes.  I got several books from the library.  Haven't been able to finish most of them.

I have been having the worst case of chemo brain I've ever experienced.  I will be talking with Levi or someone else, and the word or thought that I just had is gone.  Completely gone.  Or, I can feel the word, but it's just out of reach and I can't quite tell you exactly what it is I'm trying to convey.  I feel utterly stupid so much of the time right now.

I am completely overreacting to things; case in point...I generally don't get too upset when the kids spill something, or break something, or do some other kid-thing that is a mistake.  Sunday night, Julia broke a candle container in the bathroom.  It was maybe a $5 glass jar, and with the stones and candle, the entire thing may have been $12.  I completely, utterly lost my shit.  And, as it was happening, I had this part of me that was almost outside of myself, gawking at what I was saying and doing, wondering why the hell I was making such a big deal out of something so small.  I am also finding myself snapping at the kids, at Levi, for things that I usually wouldn't even blink an eye at.  And, again, at these times, I can't stop myself, but I also have this part of me that is just dumbstruck at my overreaction.

I haven't been sleeping well, at all, for several weeks.  Some nights, it takes me forever to fall asleep.  Last night, I didn't fall asleep until well after midnight.  Other nights, I'll fall asleep but wake up several times for no reason.  Sometimes, when I'm laying in bed trying to get to sleep, my brain is running in a hundred different directions.  The thoughts are not productive, either.  One night, I had a 45 minute conversation in my head about wanting to pain the walls in the house, and went on and on about color, texture, why I should try that color, wouldn't grey be nice, should I try a blue-grey, wouldn't that match Julia's eyes, maybe I should go with more of a green-grey, maybe I could do alternating wall colors, would that go with the couch, maybe I should recover the couch, how about it I painted the ceiling.....ARGH!  I haven't had a good, restful sleep in too many weeks to count.  That isn't healthy.

So, I went to the consult yesterday.  I am so glad that I did.  She and I talked about how much I have been through, what my concerns are, etc.  It was good to have someone validate what I'm feeling and experiencing, and to tell me that it's normal.  There was such a sense of relief when she said that.

I'll try to convey what she told me yesterday.  In laymen's terms, she explained that the brain has a finite amount of neuron receptors (I think that's what she said) to work with, and they need chemicals to work properly (seratonin, etc.).  With the amount of shit I have been through over the past, well, 2+ years, she said that my brain is basically running on empty, and it's scraping the bottom of the barrel to find fuel to work with.  She likened my brain to a race car....if you have an Indy 500 race car that is used to running on racing fuel to keep going fast all the time (i.e., to make my brain function normally in spite of all the crap going on), it's eventually going to run out.  Right now, my brain is like that race car, but now, it's running on old, leaded fuel.  It can work, for a short time, but in the long run, it's unhealthy and unsafe.

So, how to fix it?  We talked about several options, and decided to start with an SSIR called Celexa.  Here is some information about that - it's just a starting point, and we are going to try it out for a few weeks to see if I see a difference.  If not, there are other things we can try.  I haven't looked at the side effects, or the reasons why it will or won't work.  I'm leaving this up to her.  I don't want to clog my brain up with useless information and more things to worry about.

She did give me some information about short and long-term side effects.  Short term - some mild nausea at first, but that should go away.  I may feel slightly tired, but again, that should go away.  Long term - there may be some sexual side effects (I won't go into those too much, especially because I know some folks from work read this....).  Once my brain chemicals restabilize, there may also be a sense of emotional numbness....I may not feel down and depressed anymore, but I may also not be able to feel joy.  She mentioned them only because she wanted me to be aware that, if I start to see these things occur 6-8n months down the road, I should bring them to her attention.  Other than that, it seemed to be the right decision.

She also put me on a drug to help me sleep called Temazepam (name brand Restoril).  I tried taking one pill last night (dosing is for 1-2 per night).  It didn't help.  Well, let me rephrase that.  I felt like I wanted to sleep, but was on the edge of falling asleep but needed a push to get there.  It sucked.  I'm going to try two tonight, and if that doesn't help, I'm to call her tomorrow to get on something else.

I feel some relief knowing that I have a medical professional helping me get through this.  I explained to her yesterday that I feel like, for so long, I have been like a quilt.  There are all of these pieces of me that I've been able to sew together, strongly, tightly bound together, making up who I am.  Lately, though, I feel like those bonds are gone, and I am trying to hold my life together my short, weak threads.  It's terrifying.

I just don't feel like me.  I've noticed that my kids have seen it - they've actually asked if I'm okay.  That, to me, is the worst part.  So, I will gladly take these pills, and pray to the pharmaceutical gods that this kicks in quickly and helps me get back to being the me that I so desperately miss.