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.