Sunday, March 8, 2015
Friday, January 9, 2015
I felt like I haven't been able to take the time to really update you all on everything that has happened these past few weeks, and to let you know how bad things have gotten. So, here goes....and, pls forgive the typos, b/c I am on Levi's tablet...
As you know, over their past few months, my back pain has continued to get worse. As I have worked with the pain dr, we keep trying to stay ahead of the pain. In the beginning of Nov, pain dr wanted to do an MRI to determine if there was something physiologically wrong. And, because of the severe back spasms I had while going into and coming out of the MRI/general anesthesia, I ended up in the hospital.
I haven't told many ppl just how bad the pain got. At one point, I almost wished for death. The pain was completely unbearable. It was hands down the worst pain I have ever experienced. Just all consuming.
Finally, after getting several administrators involved in the process, they put me on an external pain pump, like the ones you get after surgery, where you push the button to get the extra meds. Honestly, this is the only way we were able to keep the pain under control. For tne first 2 days (Thurs and Fri), I was completely bed bound. My body was so tired and worn down, I didn't even get out of bed until Saturday morning.
Over the next week or so, there was a lot of background work happening to get me pain relief. On the following Wednesday, they did a test to confirm that my pain pump was distributing the right amount of medication in the correct location. During that scan, they realized that my right kidney is enlarged.
On Thursday, the pain dr moved my pain catheter to a lower area in my spine, which has helped. I spent the next few days recovering, trying to get stronger and ready to go home. On the Monday, I had a renal scan, which is an easy test to teIl the dr how my kidneys are functioning. I was also told that, barring any major issues, I should be able to go home the following day.
Well it's me, so there was an issue on the renal scan. My right kidney takes about twice as long to drain as my left kidney, due to some unknown constriction in my ureter (the tube that drain the kidney into the bladder). The solutions presented to me were a nephrostomy tube and bag, or a stent. The tube/bag, which is what I went with, is basically a small diameter tube that runs from my right kidney, out a teeny incision in my back, and then connects to a larger tube and a collection bag, which I have to empty several times during the day. At first, it was pain to get used to, but I each day is a little easier. If I had chosen to go with the stent, that would have meant a tube with corkscrews at either end but the unit is all internal, used to hold the stent in place in the kidney and in the bladder. The potential problem with the stent is that in about 80% of people, the stent causes extreme pain and discomfort. So, I chose the bag. The open incision for the neph tube in my back is covered by all sorts of bandages and stuff, so a) it doesn't move, and b) it doesn't get infected. I go to CTCA each Monday to get the bandages changed and checked. So far, it isn't awful. Kind of a pain in the butt, but I am getting used to it.
So, while I was in the surgery for the neph tube, I got a voice mail from the place doing clinical trials, letting me know that the 2 trials I have been waiting for word on, have opened up. *sigh* So, the neph surgery was Tuesday, Wednesday I went home, Thursday I rested, and Friday, we were at T-Gen, talking with them abt what options are available.
The following Tuesday (or maybe one week later..., I can't remember anymore...) I started going to TGen to start the clinical trial. Oral pills, 2x a day. First day was a 14 hour day. I slept most of it away. They needed me there to take labs, do EKGs, etc. The next day was only a 4 hour day (remember it's almost an hour there, one way, with no traffic....), but I was running a low grade fever. Over the next couple of days (with no follow up from TGen to see how I was feeling), I was completely immobilized due to a stomach bug that the kids shared with me.
Follow up with TGen a week later showed 9.5 lbs lost and many missed doses of the trial drug. My Dr talked with the sponsors of the clinical trial and I was allowed to continue, in spite of being weakened. Next week was okay. Third week, TGen let me go 4.5 day with an undiagnosed UTI, which I am not kidding you, almost killed me. I was in so much pain and so exhausted, it was awful. Thank goodness for the fetal position and antibiotics.
Anyways, because of the 1-2-3 punches I have had over the last, well 6 weeks, I am in quite a weakened position. I am pretty much bed/couch ridden, and need everyone else to help me with meals, laundry, etc. I mean, I am completely wheelchair bound when we are out and about, and in the house, using my walker almost exclusively. I fell out of bed a couple of times, so we have had to make some serious changes to stop that from happening.
Meantime, I have also been dealing with what can only be described as low-level electrical currents running thru my body, esp in the afternoon and at night, causing my entire body or Individual limbs to basically spasm. I have been resting on the couch, and my entire body will just jerk or jump, hardcore. I have thrown my phone 3 1/2 feet, or spilled water on myself. It was so bad, you guys.
On New Year's Day (the day my MIL came back into Phoenix), I had a particularly bad episode, and Levi and my parents took me up to CTCA. They switched up my meds again, from some pretty hefty drugs to, of all things, Midol and Valium. It would be funny, except for the fact those two things stopped the spasms, and I now consider them the nectar of the Gods.
So, where am I right now? Because of the drastic change in my "clinical well-being", as I think they called it, I am no longer on that trial. Thank goodess; I have a couple of weeks off of the trial drugs, and then I meet back up with my clinical trial team on the 28th to figure out what I want to do.
I would be lying if I said I knew what I was going to do. We haven't had very good luck at TGen, so it's hard for me to want to go back there. But, if I stay at CTCA, there aren't many options left. And, to top everything else off, I found out yesterday that my oncologist at CTCA is leaving next week, and I will have to get to know and trust a new med-onc. They put me with the head of medical oncology (who I know is great, but his specialty is not colon cancer), so I am trying to get moved to a different doctor, who's specialty is colon cancer. We'll see how this works out.
Meantime, I am weaker than I have ever been. With the exception of my still-swollen legs and feet, my body is nothing but skin and bones. I am starting to look like your stereotypical "cancer patient". It freaking sucks. I have to use a shower chair and hand-held shower head to get clean, and even that process exhausts me for the rest of the day.
I would be remiss if I didn't publicly thank my parents and my husband for, well, everything. They have taken over everything....laundry, cooking, grocery shopping, Christmas shopping and wrapping, homework and projects, etc. Mom has been my medical caregiver, taking me to almost all of my drs appts. Dad has been juggling work, kids pick-up and drop-off, kids drs appts, etc. Levi has gone above and beyond "in sickness and in health" and has been my everything over Christmas break and ohr anniversary.
So, I guess what I wanted to let you all know is how precarious things have gotten. My brother Greg and his fiancé aren't planning for the big wedding until 2016, but they are planning to come down here soon to get a marriage licence and get married, so I can be in the wedding. Isn't that awful, but sweet? I was very much against it at first, just on principal, but when I started thinking about it realistically, it makes more sense.
Let me say that emotionally, I am feeling better than I did earlier this week. This has been the hardest thing I have ever gone through. It's literally been one crisis after another, and I haven't even begun to get my head around what's happened. And there is still more coming down the pike. We are now month to month on our lease, and we are on a daily search for a rental closer to the kids' school, so they can walk or bike to/from if/when I am sick or gone.
*sigh* There is so much to do, and I can't do a damned bit of it, yet, or without help. The house needs to be packed and pared down (as you do when you move), I need to get the office cleaned out and organized enough that Levi can find things and we can start transitioning bills, etc. to him. I have some small projects for the kids for when I am gone that I need to work on and complete.
So, what did I miss? Other than that, for the most part, my sense of self and humor are still in tact. They/I took quite a hit, as you can imagine. Again, this is without a doubt, the hardest time of my life. I know what's coming, just not when. And that's hard.
Tuesday, October 21, 2014
As you can imagine, the past few weeks have been just hell for me; trying to process everything has exhausted me mentally, physically, spiritually....really, it took me down for a good two weeks.
Because, after I got all the news that my CEA is up and my tumors have grown....yeah....that Thursday, I was diagnosed with lymphadema in my lower extremities. The swelling that I have been having for the past two months appears to be caused by those two rogue lymph nodes that I may have mentioned in the last post. They showed up on the CT scan as enlarged, and appear to be the reason I am having this swelling.
Unfortunately, I went into the appt on that Thursday with no expectation whatsoever that I might be diagnosed with lymphadema, and the poor girl who walked me through everything....well, I was her first patient to diagnose. Ever. She had just returned from lymphadema certification that Tuesday. And, here I am, in her office, crying my eyes out because not only do I find out that my chemo isn't working, my tumors are growing and my CEA is up, but now you are also going to tell me that I have this thing that I am going to have to deal with for the rest of my life, and if I don't do therapy 5 times a week for 2 hours each day, I could end up with elephantitis? Yeah - I wasn't in a good place.
I recovered from that, though, and I have been doing the therapy as instructed. I usually get between 3 and 4 therapy sessions in a week, just because 5 seems almost impossible, with everything I have to do around it. Matter of fact, the only reason I am home today and able to send this in is because I cancelled my appt today; I so needed a break. Just, to not be down at CTCA for a day. I love that place, but when I have to be there every single day, it gets completely overwhelming.
So, yeah. That's been quite the thing. I won't go into the nitty-gritty; I should, but I just don't feel like it. The first day of therapy included massage and then wrapping my leg in a layer of gauze, foam., then 8 (I think) ace bandages, keeping a very tight compression on my leg. There also was no way for me to walk out the door, because they had no footwear to place over the 3/4" of bandages that were on my feet. It was quite the debacle.
But, I won't dwell on that. That was 2 weeks ago, and the issues that I faced (that almost broke me) have been addressed and resolved. Suffice it to say that, where CTCA failed me in some ways, they stepped up in other ways that more than made up for the hiccups.
What else? Oh - Levi and I went to T-Gen this past Friday to talk about clinical trials with Dr. B. (I won't spell his name out, partially because I don't remember how to, and partially to keep his identity at bay...) I'll be honest, we didn't walk in there with the highest of hopes. Our last appointment there was less than stellar, so we weren't super excited about being there. I am happy to say that Dr. B. was amazing, took time with us to answer any and all questions that we had, and talked with us about the options available to me. There are three - one has already had one round of testing, but I will know this week if I will be able to join in the second round of trial. There is one more that I should hear back about this week, to see if there is availability.
Basically, as I understand it, the trials T-Gen is doing right now are phase one, meaning the drugs they have chosen to test (they are very picky about what they choose) have shown to be effective in the lab and in animal testing, so now they are starting with human trials, first trying to find the maximum tolerable dose, while trying to get some data on side effects and efficacy. This is what I will hopefully be taking part in.
I'll be honest - I wasn't even going to do anything until after the first of the year. However, Dr. B. mentioned several times (without knowing what I had decided) that he would rather get me on a drug trial sooner than later, to make sure that the cancer doesn't go out of control. I wasn't too sure about this, but Levi piped in that he agreed, and that was enough for me. So, as it stands, I am waiting to hear back from them regarding what clinical trial I might be able to take part in.
The bad news about T-Gen is that they are 45 minutes away with no traffic, and they require me to be there for a certain number of days per month per cycle, and that is going to be tough, esp. with Levi working out of town every week right now. But, we will work it out. The longest day is 12 hours there, and the rest seem to be short enough that I can work them in around school drop-off and pick-up, but it's definitely going to put a damper on my lymphadema therapy, so I am not sure how it's all going to work out right now.
Oh! By the way (see, here's the topic jumping taking place...), the lymphadema therapy is working. After some discussion, it was mutually agreed that the wrapping that initially took place wouldn't fit into my life, nor did it accommodate for my back pain (matter of fact, it kicked it up something WICKED!). Instead, I am wearing compression thigh-highs (well, crotch-high's, since they reach all the way up to the tippy-top of my legs), but crotch-high's really doesn't sound as sexy as thigh-highs. Anyway, I digress. The therapy is working, and my swelling is down considerably. Woohoo!
So, lymphadema, T-Gen....what else was I going to tell you about? Oh! I was asked to take part in a fundraising effort for Arizona Assistance in Healthcare (they provide grants to cancer patients undergoing treatment to help with non-medical expenses, like gas, food, rent. etc.), which is called Project Pink. The event is meant to support women with cancer, and is being done in conjunction with a vintage fashion show, put on by Robert Black (his agency is Ford|Robert Black....very schwanky!). I get to wear a vintage-y dress (we tried to get me to fit into an actual vintage dress, but the woman back then were much slimmer and less broad in the shoulders), and the morning of the event, the fine folks at the Red Door Spa at The Wigwam (a resort here in the west valley of Phoenix) will be doing my hair and make-up. Fun part is that they have asked to have Julia come with, so she gets to take part in the fun day of getting all dolled up. Matter of fact, right now, I am trying to figure out how to get enough time pulled together to go to the store and find her a dress! But, I suppose there are worse problems to have. Since I am the honorary chair of this event, I get to speak in front of the attendees and put a face to the foundation, asking them to put more of their money into the pot, so to speak. It's going to be a wonderful event, a mid-day luncheon with a fashion show and lots of networking. And, I get to get all dolled up, which isn't a bad thing. I'm just hoping I can get my pain under control enough to wear heals! LOL!
Okay - I think that's enough for now. I feel like my brain is going to explode. On top of everything else, I have been officially terminated from Honeywell, because I went beyond their allowable 18 months for disability. Because of that, I am dealing with all of the transfers required, including health insurance (which I can't get a solid, single answer on), life insurance policies, etc. It's such a pain in the ass, and just more that I need to try to get a handle on.
*sigh* I know it will get better, eventually. But, right now? I am just tired. Tired and in pain. And overwhelmed.
But, I will get through it. I always do. Meantime. I'll update when I know more.
Wednesday, October 1, 2014
I had a routine CT scan this week, Monday, to be exact. I also had blood drawn, to pull (among other things) a CEA check. I have been avoiding this like the plague. I just didn't want to know - I think that, in my heart, I already knew what was going on.
Anyways, results for the CEA showed that it went from 19.7 back in July to 29.4 on Monday. *sigh* I am grateful to my friend Tara (my #wcw) for standing beside me (holding me up, truth be told) as I looked at the results, because I was shaking and nervous and a blubbering fool. She held me up when I needed it, cried with me as we realized what the results were, and helped me process the information so that I could take the next steps.
On Tuesday, Mom and I went to the doctor's appointment, prepared for bad news. And, I won't lie - it wasn't pretty. However, it wasn't as bad as it could have been (and there pops up Sunny-Side-Up-Michelle, finding the silver lining in everything....).
Results highlights - my lung tumors have increased slightly in size, i.e. 1-2mm, but there aren't any more of them. The tumor in my abdomen on my left side has grown slightly, as well. Something new popped up this time, which my doctor referred to as *interesting*, which I wasn't impressed with - there are three new enlarged lymph nodes showing up, one in my chest and two in my pelvis. They are capturing the cancer, which is good, except that they are capturing the cancer, which is, well, bad. Other than that, things looked, well - okay.
So, what's next? Because the current Xeloda/Erbitux regiment isn't working any longer, I am now off of that. And, we are looking at some scary (to me) options.
First is always the one last remaining FDA approved drug, called Regorafenib. It's a drug that works to stabilize existing tumors, but has a plethora of side effects. We would start this out slowly, and work my way up, based on how well I tolerate the drug and what side effects pop up. We are still trying to keep this in our proverbial back pocket, so on to what else we are looking at.
There is a new drug that has gone through phase 3 clinical trials and is on it's way through the FDA for final approval, called TAS102 (I don't know what the official drug name will be). The clinical trials on this one appear to be very promising, according to Dr. K., and he is working on a way to get me this medication through a system called compassionate care, which means that patients who qualify to get this drug have an opportunity to, prior to the official FDA approval, which can take months or years. Basically, they know this works, and they know the group that it could work on - this gives those patients (i,e,, me) an opportunity to receive the medication before it becomes commercially available. Dr. K. seemed to have high hopes for this one.
There is a phase 1 clinical trial (meaning it's first test on humans) at T-Gen (they are local) called a WNT Inhibitor. I just did a quick google search for this and became completely and utterly overwhelmed with the very complex medical terminology. What I do know is that this is showing, in Dr. K's words, rather impressive results for a phase 1 trial, so I am working with T-Gen (they are based on Scottsdale, about 45 minutes away) to set up an appointment to get more information about this.
Because we are at proverbial end of the road for treatments, I am going to start on a serious research mission, with the help of family and friends. I am going to look into getting a second and possibly third opinions on my case; I don't know exactly where yet - that is part of the research. But, among the possibilities are Mayo-Rochester, Dana Farber, and Johns Hopkins. There is also a facility in Nashville, TN, called Sarah Cannon Research Institute - they are one of the largest research foundations, focused on clinical trials. There are also some alternative therapies that look very promising (based on medical research, decades of effective use, and statistics showing very optimistic results). As I get more information on those, and feel comfortable sharing, I will let you know.
Meantime, there is a lot to think about.
I am currently off of chemotherapy, which is kind of scary. If I choose to do a CT (clinical trial), I have to undergo a washout period, meaning no chemo, which usually is 4-6 weeks. If you look at a calendar, that takes me to just before Thanksgiving. I am seriously considering not starting any new treatment until after the first of the year, which is a very scary thought, but here's my reasoning.
Traditional chemo isn't working. My lifelines are becoming very few and far between, and while there may still be some options on the table, truth is that my life is going to be significantly shorter than my peers. I haven't asked for a prognosis - I don't want to have a guesstimate of how much time I have left. No one really knows. I *do* know that it isn't the decades that I would like, so I have to learn to live with that.
If, and I do mean IF, this is my last holiday season/Christmas with my family. I don't want to do it while fighting off side effects from a new drug or concoction. I want to feel good during the next few months, and I want to make this holiday season one that we will always remember. I have already started by decorating the house with some fun Halloween stuff, including a very fancy-schmancy fall-themed wreath that now hangs proudly on our front door.
I have started working on the kids Halloween costumes - I usually leave this up to the stores, and simply purchase an off-the-shelf packaged deal. This year, Julia wants to be a weeping angel, a scary character from Dr. Who. So, I went to Goodwill, found some fixings for the costume, and in the next few weeks, we will be practicing with makeup to make her as scary as she wants to be. Kevin doesn't know it yet, but his costume (Pikachu, a character from Pokemon, in case you were wondering...) is already purchased and hiding in our closet. Last year, I was in the hospital for Halloween - this year, I am very much looking forward to dressing up in a sassy (maybe sexy?) little costume for our friends' annual Halloween fiesta, taking the kids trick-or-treating, and enjoying the hell out of ouor beautiful weather this time of year.
I want to make this year special; I know, they are all special. But this year, I am even that much more aware of just how damned special these memories are, and I want to do everything in my power to make this the best year yet.
So. treatment may just have to wait.
How am I doing, emotionally, with all this? Hmmmm....I have a few different viewpoints on that. I am scared, more scared than I have ever been in my entire life. I am looking at dying - maybe not today or next month or next year, but sooner that I freaking want to. And, I don't know what that's going to look like. Will my lung tumors grow so I can't breathe? Will the cancer just take over my body so I wither away to nothing, some shapeless shadow of my former self, waiting for the end? That's fucking scary - I don't care who you are. Even if you believe in an afterlife (which I do), and even if you believe in heaven, the very thought of dying - how you get to that point, and how it all ends - is one of the scariest things I have ever imagined.
So I often choose not to think about it.
I am angry. This isn't fair. I don't care what I did in a previous life - this isn't fair, on any level. I want so badly to lash out at something, some physical thing. I want to hurt it the way it's hurt me. I want to make it suffer the way I have had to, the way my kids and my husband and my parents and my family and my friends have had to. I want to make it hurt, so badly that it wants to die, then make it suffer some more. The anger is awful - it's primal, and it would completely overtake everything, if I let it.
So I don't. I can't waste energy on that, when there's no way to fulfill it. So, I ignore it.
I am sad. The thought of leaving my kids and my husband is just awful, horrible....there aren't words to describe it. The thought of leaving my husband to raise our babies is just.....I don't know. I don't doubt his ability to do it - that's not the case. It's just - he shouldn't have to. I am too damned selfish, and I want more time with my kids and my husband. I want more time with my family - my parents, my brothers and their families. Back to my kids - I don't want them to grow up without me. There are things I want to say to them, things I want to teach them and things I want to see them experience. I don't think I will be here for some of those things, and that tears my heart into millions of tiny sharp shreds, each scratching holes on my soul.
So, I try not to think about it, too much.
I have so many viewpoints on this - it's like different versions of myself, all vying for time and attention. Some, I give time to. I have to - I think it's only healthy to think about the reasons I want to live, like wanting to see my kids hit the next milestone. Some, like the anger, I can't even acknowledge for more than a moment. It becomes all consuming, and that isn't healthy.
I don't think this has all sunk in yet. I did have a good cry on Monday, after I saw the CEA results. I also think that, in my heart, I already knew, which was why I didn't even want to look. I just wanted to prolong the ignorant bubble I have been living in - I even delayed doing a CEA check a month ago, specifically because I just didn't want to know.
But, now I do. So, what do I do with it.
I don't quite know yet. Well, I do, in a broad sense. I have some research I have to do - some that I need to do myself, and some that I will be delegating out. I have already started that process - the delegating, not the research. I think I am ignoring it for now - there are so many other things that needed to get done. You know, life things. Scheduling the kids dentist appointments. Taking Julia to urgent care in half an hour, because the cold she has is taking hold and won't let go. Trying to find Kevin's homework because he "forgot it" again.
Life keeps happening, and I need to live it. I think that's how I'm handling this. Regardless of what happens with or to me. life HAS to go on. It's messy and inconvenient, but it goes on. So, I need to schedule the research, the meetings, the appointments, the thinking, the worrying, the planning - all needs to be scheduled around life.
And isn't that a wonderful thing? I am trying to relish this life - I don't know how long I will live it. How long I will have to feel this good, and to really enjoy the wonderfulness of the simple things, like sitting at my laptop, purring kitten on my lap, sleeping puppy by my feet. I don't know how long I will be able to tuck my kids into bed at night, and tell them 100 times, over and over, that I love them. I don't know how long I will have to laugh with my husband, to grab his hand as he walks by, to wrap my arms around him and hug him as tight as I can. I just don't know.
So, I keep living life. The research, the fact-finding, the decision making will all come in time. But today is busy, and tomorrow isn't looking any better.
I don't have to make a decision today or tomorrow. That day is coming soon enough. Until then, I am going to keep living life. That's how I am dealing with this. It's probably not healthy, ignoring the emotions like I am. For now, it's working for me. Today, I love my little bubble. It's a warm place, full of messy life.
And, with that, I am off to take Jules to Urgent Care, then to pick Kevin up, get dinner, come home to my clean house (thanks to three amazing ladies from CTCA who came over last night and did an amazing, AMAZING job!!!), and fall asleep in my bed, wishing my husband were here with me. I think he comes home tomorrow night - maybe I'll make him a cake. He likes chocolate, with pudding.
I think that is a good plan for dealing with the shit that cancer has thrown at me. I will bake a cake.
Fuck you, cancer. You may be trying, but I'm still living. So, fuck you - you aren't welcome here, and I am not going to stop my life for you. I've got too much living left to do.
Tuesday, September 9, 2014
Disclaimer: I am sitting in chemo, using my husband's tablet to try to update the blog (because I have been, if you'll excuse the expression, balls to the wall busy the last few weeks). I am hoping that by trying to do this from my email, it will work. *fingers crossed*
So, the last, oh, 6 weeks have been absolutely crazy. I mean, most days have been just trying to make it minute to minute, and hoping I don't lose the kids or my keys or my phone or my mind. And, most of the time, I managed to make it through the day without crying or getting so pissed off I wanted to punch something.
I have been meaning to update you all on how things have been going. Every time something happens, I mentally write a post, then don't have the time to actually sit down and type it out. So, while I have the time, I am going to try to remember everything and update you.
Physically, I am doing well. As I said, I am sitting in infusion right now, getting erbitux. I am on a weekly regiment of erbitux, and on a week-on/week-off regiment with the xeloda. So far, I feel really good on this. About 6 weeks ago, we had done a lab draw with CEA, which had gone up to almost 20. Needless to say, I freaked our. Dr. Kundranda wanted to know what was going on, so I had a CT scan.
On the same day, my father-in-law flew into town, and brought with him my new puppy!!!! Yes, we have a new puppy! When I can get back to my laptop, I will post pictures of her. She is just a baby....4 months old, a Pembroke Corgi, fluffy and full of energy and sharp teeth and so much love it hurts my heart sometimes. She has bonded to me, almost immediately, and she has quickly become a wonderfully amazing part of our family.
And, yes, we still have the cats. The cats and the dog are still learning to live together, but so far, it's working out just fine.
Back to the CT....as you an imagine, that day was very intense. I went from getting the higher CEA on Monday night (very low) to the appointment with Dr. K and talking about what happens if the CT scan shows growth (extremely low) to meeting my baby girl, Gizzy, (a great big high) to hearing back on the CT scan, which came back with minimal growth on two tumors on my lungs (another high)! It was, honestly, an exhausting day.
That week, I also ended up getting my pain pump put in. (Seriously, I am not kidding when I said that I have been on the brink lately.) It worked out that , beause of the CT scan, I was off chemo for over a week. As that is a requirement of getting surgery, it worked out that I could get the surgery that week. So, I went into surgery more than a little frazzled, but it worked out for the best.
The recovery from the surgery was tough the first three days, due to fatigue (I didn't sleep well the first two nights) and withdrawal from the oral pain meds, which should have been tapered a bit more. But, live and learn.
....honestly, I am trying to rack my brain to try to remember what else has happened. Trust me when I say it has been crazy.
The week after my surgery, the kids started school (7th grade for Jules, 3rd grade for Kevin) and are doing really well, in spite of a few issues with Kevin that we are working on. And, my good friend Ilana came into town and visited....not as long of a visit as either of us wanted, but since she lives in the Pacific Northwest, I will take what I can get. :)
The week after that (so, 2 weeks after surgery), my best girlfriends in the entire world came to see me. We rented a house in a neighborhood far enough away from home that I felt like I was on vacation, but close enough that we could stop over and say hello. I have known these ladies for over 18 years, and haven't seen most of them in something like 7 years. It was just....I don't think I have words to really say how I feel about these women and how amazing this weekend was for me. I asked them to come when I was at a pretty low point a few weeks earlier, and within a week, they had flights booked, had rented the house, and were ready to come. It was such a wonderful weekend; even though we live so far apart, being with them was natural and perfect and really felt like no time had passed, except when we talked about our kids and husbands. lt was just a spectacular weekend.
And, the weekend after that (3 weeks to the day, matter of fact), I flew home to New York to attend my 20th high school reunion. Despite some travel snafus, the trip was fabulous. I saw my brothers and nieces, my future sister-in-law asked me to be in their wedding , and I was able to catch up with people I haven't seen in many many years. I played tourist in my hometown, ate some really good food, and reminisced about my childhood. It was just a wonderful trip.
Side note: my pain pump did not make the TSA x-ray machines here in Phoenix go off (the one where you stand inside and hold your arms up in the air). However, it did make the walk-through machines back home go off. No big deal....they took me aside and did a patdown, which is fine by me. Just thought I would share.
The weekend after that, I slept. A lot. I was pooped....so, we spent that Sunday doing nothing. I didn't even shower or change out of my pajamas. It was awesome.
So, I think that's about it. I know there is more; for example, I finally met the child-life specialist here at CTCA, and she is just amazing. She came up to see me in infusion one day, and while I spent most of our time crying, she helped me process some things that have been weighing very heavily on my mind. For several weeks after my CEA went up, I was really struggling with things....I was/still am very fearful that we are looking at some very heavy decisions sooner than I had hoped (I.e., what do we do if the next CT scan, in 4 weeks or so, show growth?). And, worrying about that had started to consume me. If I am being honest, I still think about it, but I am trying not to focus too much on it. I got to a point where I was obsessing about what I wanted to finish...projects I want to complete for the kids, things I need to do around the house to get things in order for Levi, etc. So, while it's better, I still think about it, but I also am working on accepting the fact that, if I don't get those things done, it will be okay.
And, with that, I am going to proof-read this and send it off. More as soon as I can sit down, so maybe next week. :)
Thursday, July 17, 2014
...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
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.
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.
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.