A Lengthy Update

So much is going on that I am not sure where to start, but I want to try to get everyone up to speed with me and Ron.  Forgive this jumbled, rambling post.  A week was too long to wait for an update . . . I just kept trying to postpone until I had some actual news with relation to the appeal to Novartis.  So, I guess we start there.

It took Ron’s oncology nurse six days to call me back with regard to the appeal; six days, four calm voice mail messages from me, one voice mail from Ron’s former hospice nurse asking the oncology nurse to call me, a two page letter written by me listing out the myriad of issues that developed and needed to be addressed while we were waiting for the original call back, and then one very dysregulated voice mail from me left after hours on 1/10/12.  In the last voice mail, I was actually screaming and crying.  I felt like a crazed girlfriend, leaving multiple messages on some guy’s answering machine, sobbing, “I don’t know what I did to make you not want to call me back, but I don’t know what I am supposed to do without you.”  It was a bit intense.  And it somehow worked, because she finally called.  Then.  After making me go insane for almost a week.  This seems completely unacceptable to me, but at the time, I tried to celebrate the fact that she actually finally called back.

The reason, she explained, that she took so long to call was because she was trying to find a supervisor at Novartis to complain to about various scenarios being given to me and to her regarding whether or not they would cover the medication if he were in hospice.  This is all fine and good.  Complaining is great.  Whatever.  But, it could be done at any time and in the meantime, her actions delayed the appeal a full week from when I learned we could appeal, because she failed to call me back about the paperwork I needed.  And then, she went ahead and submitted the appeal herself, when I had actually wanted to do it, because it got screwed up the first time and I became convinced that in order to get it done correctly, I needed to just take over.  She submitted the appeal on 1/11/12 and she called on 1/13/12 to find out about the status.  When she called on 1/13/12, Novartis had no record of it.  Why?  Because they had not yet pulled it off the fax machine . . . so yet another two days were wasted and still no answer about whether Ron will be approved so he can get back into hospice.  Bottom line, we are still waiting.

I mentioned a myriad of issues that came up.  Well, between Ron seeing his unhelpful oncologist on 1/3/12 and my frantic voice mail to his nurse on 1/10/12, things got worse.  He had increased fatigue (falling asleep mid-conversation or while eating meals), his pain was worse in his kidneys and sometimes his liver, he was having a lot of pain and difficulty with urination, he needed refills on medications, and he was having increased trouble draining ascites from his abdomen.  For all of these things, as well as the appeal paperwork, I needed a call back from the nurse, which is why it was so awful and made me so insane that she just plain did not bother call me back, even when I dropped off a letter listing it all out.  The last issue, related to the ascites, seemed most worrisome.  Since Ron had a PleurX catheter put into his right side in May to drain this fluid (which gathers in his abdomen because his liver is not functioning right), he has been draining out a liter to two liters per day.  All of a sudden, the volume shrank down to around 400ml per day.  No amount of repositioning helped; all it did was cause severe cramping. 

When the nurse finally did call me back, we were able to increase his pain medication and she was able to order (with the help of his absent, uncaring doctor, I am sure) a CT scan and urinalysis.  We spent 1/11/12 getting those things taken care of at Borgess Hospital.  We also went out for lunch as a special treat to ourselves for what we were going through, but Ron tripped and fell to the sidewalk on the way into the restaurant, which was terrifying for both of us.  He was alright and without serious harm, but both of us saw his life flash before our eyes, realizing it could snuff out that quickly, with something that dumb.  It was also frightening to see how weak he is becoming, especially when he cannot eat before procedures, like a CT scan. 

The results of the CT scan were, more or less, shared with us while we were at Borgess.  His liver is taking up most of the space in his abdomen.  There is simply less fluid to be drained.  He just feels so full and has trouble breathing and eating because of how big the liver is.  The PleurX tube did not need to be flushed or adjusted.  There was really nothing they could do.  Ron and I looked at the CT scan on a monitor.  I remembered doing the same more than a year ago at U of M.  I tried to remember what his liver looked like then.  I think it is bigger now, but that is just going by my own memory.  I thought, ‘Gee, if only he had a proactive doctor who would compare the scans from then, or even his most recent scan done in September, to this one and let us know what is going on.’  But, his current oncologist flat out refused to allow Ron to be scanned when we asked about it on 1/3/12.  He told us there was no point, since he can “see” (apparently with the naked eye or some kind of x-ray vision special power he possesses) that the tumors are growing and he knows Ron is dying and told us a scan would not change the course of Ron’s care.  He really is the most unhelpful, discourteous, rude, condescending, hopeless doctor I have ever met.  So, I knew he would not be comparing scans.  Or even if by some miracle he had an interest in Ron (which is obviously kept secret from us during our visits), I knew he would not share any insights with us because he and his nurse refuse to ever call us back or have much to do with Ron’s care.  Ever.  He did call in an antibiotic on 1/13/12 due to high protein in Ron’s urine . . . but even this was not explained well and I am not sure what is going on – whether it is a urinary tract infection or what.  

In the midst of all of this, we are still out of hospice.  So, it feels like me and Ron versus the world.  I have to fight, everyday, sometimes all day, whenever I am not at work, for Ron’s care.  It is exhausting.  It should not be like this.  Shouldn’t someone, some health care person responsible for his care, actually be doing the fighting for us so that we could just concentrate on being together with what little time we have left?

Ron had visitors from 1/13/12 through today.  On 1/13, his brother, sister, cousin, and friend came down through the snowstorm and they all went out for lunch and took him to run some errands.  This was helpful because I had actually come home from work early with some kind of stomach bug.  I have not taken time off for myself for an illness in well over a year (maybe two?!), so this was a rarity and I was not feeling good at all and appreciated them being here for him.  Ron had fun, but I could tell he was worn out when they left; he slept the rest of the evening.  Then, on 1/14, he had two dear friends he used to work with at a summer camp who came to join us for the long weekend.  And on 1/15, another friend from camp and her husband came for the day.  Ron was so happy to have them all, but unfortunately was in excruciating kidney pain on 1/14.  On 1/15, while we were all out having breakfast, he sprung a leak at his PleurX catheter site, where the tube goes into the skin.  It was leaking through the bandages that cover it, his shirt and pants, and even sprayed a little.  We got him home and looked at the site, but could not get it to stop and did not feel safe managing it ourselves.  So, we took Ron back to Borgess to the ER.  I know it killed him to miss time from his visitors to go to a hospital.

The ER doctor looked at the site, which was still weeping, but less flowing.  He consulted with the on-call oncologist and Interventional Radiology.  They all three decided that Ron would go home and sop up the extra fluid with gauze overnight, with the plan that he would have outpatient surgery to replace the catheter the next day.  The ER discharge instructions said Ron could not eat in the morning and for us to call Radiology.  We brought Ron home and he was so worn out that he napped for much of the day, missing precious time I know he would have rather spent with his friends.

Today, we did exactly as the ER instructed.  He stopped eating and I called Radiology at 8:00am.  Radiology did not have an appointment time for him yet and the charge nurse told me she would call back in 20 minutes.  After 50 minutes, I called again, but was no longer allowed to speak to the charge nurse because “She has your number.  She will call you.”  (Again, that feeling of a psycho girlfriend whose boyfriend is ducking her calls.)  After another hour, I called again and learned that the charge nurse was waiting for Ron’s oncologist to call them back.  At around 10:15am, the charge nurse called me and told me Ron would not be having surgery after all, because his oncologist said there was nothing more that could be done for him.  (Thanks, Dr. Hopeful!  You dick.)  This, after Ron went without eating for more than 12 hours - annoying for a healthy person, but dangerous for someone as underweight and weak as Ron (recall the trip and fall incident!). 

Without going into all of what the charge nurse said and what transpired, because it is just too much right now, I will suffice to say I made multiple calls again to the West Michigan Cancer Center today, trying to get in touch with the damn nurse . . . the same one who took six days to call me back last time.  I left messages.  I had her paged.  I was that annoying person who just would not leave them alone.  In the meantime, Ron was also emailing U of M to reach the vascular surgeon who put his Pleurx in and I emailed his former U of M geneticist, just because they have traditionally been more responsive than his current providers at WMCC.  Additionally, Ron decided that he is just plain DONE with this oncologist and this nurse.  (Thank you!!!  I have been hoping for this since October when Ron was inpatient at Borgess and his oncologist, who works just a few miles from the hospital, refused to come visit Ron or to write any orders when asked to do so by the attending physician.)  So, Ron emailed WMCC and we are currently looking into transferring to a different doctor there, as well as what we need to do to file complaints against the so-called health professionals who have completely and utterly failed to be responsible, ethical, or caring human beings.  We will be speaking to a representative from WMCC tomorrow about the issues we have faced.

Just after noon, his oncology nurse finally called me back.  She always acts as if there is nothing wrong with her behavior.  Today, she barely had a grasp of what was going on with Ron.  I argued with her for some time about his care.  Ultimately, she arranged for a visiting nurse who specializes in wound care to come to the house tomorrow to look at the site and determine what can be done, since it continues to weep fluid.  Through no thanks to the oncology nurse or oncologist, we got in touch with the surgeon at U of M who put the PleurX in, and I will call her tomorrow while the wound care nurse is here to come up with a plan.  Sadly, she seemed to concur that Ron’s skin at that site is too fragile to try to do the surgery.  And we already know there is no room in his abdomen elsewhere, due to the size his liver, to move the site somewhere else.  So, we will have to get creative to solve the weeping fluid issue in order to prevent skin break down and infection, as well as to allow him to lead as normal a life as possible for the remainder of his days.

The oncology nurse, when she called around noon, said she would call me back before the end of the day to follow-up, but low and behold, she never did.  Shocking, right?  She also told me she would call in refills on a few of his medications.  So, after waiting about four hours from when we talked, I went to the pharmacy to pick up his meds.  Sure enough, they had not been called in.  I again became WMCC’s stalker, since I called and refused to hang up until I could be connected to a live person who could help call in the medications, because I decided that I’d be damned if I would let this woman’s error take up more of my time by making me drive home and then go back out again.  After forty minutes on hold, eventually they located the oncology nurse, who was not at her desk, not answering her phone, and not responding to pages.  When the found her, she asked the on-call nurse to relay to me that yes, she had said to me that she would call in the scripts, “but that didn’t mean she was doing it right now.”  WHAT??!?!!  Four hours later????!!!!  When was she going to do it?  How was I to know when the magical hour would be that it was done?  At this time, it was 4:45pm and I am completely certain that if I had not called WMCC then, she would have forgotten to call these medications in and they would not have gotten filled today.  (Sigh . . . remember when we had hospice, and they just took care of meds??)  What should have been a half hour, max, of leaving Ron leaking at home alone turned into an hour and a half long ordeal.  Every mistake that this woman makes costs me and Ron time.  I cannot help but resent her for this.  It is a very good thing there is not a button on the phone that you could just push to detonate at the location of the person you are calling, because I am pretty sure I would have used it multiple times today.  I am so glad we will switch to a new doctor and nurse oncology team.  I just cannot imagine anyone could possibly be worse than this duo.

There is a lot more to say about everything going on . . . let alone how I am feeling and how Ron is feeling and all of that.  And then there is my fear about missing work to resolve this stuff, but it is not like I would be able to work while everything is up in the air and not being taken care of by anyone else – especially since we lost our hospice advocates.  Which is why we really need the Novartis appeal to go through.  Which is really frightening because it is currently in the hands of the unresponsive (incompetent?) nurse who never calls back or does what she says she will.  But, anyway . . . that war I will continue to wage until we get our support back.  For now, though, I have to go to sleep.  I am so exhausted.  I feel like I have been in a battle for so long today.  Fight or flight was kicked on and I was full of adrenaline and I fought hard and have patiently let it ebb out of me when the business hours ended, because there is nothing more I could do.  And now it just feels sad and awful and I need to get some rest so I can fight some more tomorrow.

Before I sign off though – some silver linings/moments of gratitude:

1)      Mysterious work person who left $25 in an anonymous envelope us

2)      Friends who gave us a gift card to Food Dance so we can have a nice meal out

3)      Friends who visited us over these last few days, who helped pick up a script, ran errands, chopped and hauled wood, made meals, cleaned dog puke, washed and replaced bedding, loaded and emptied the dishwasher, and just generally offered unconditional love and support and validation during this process

4)      Another day with Ron’s soft eyes, solid determination, and fighting spirit that he may be down, but he is not out for the count and he is not giving up