Wednesday, October 29, 2014

Slice of life of a long-term cancer patient - me, that is...

Here is the email I wrote to my nurse navigator yesterday.  As my last gasp in attempts to educate about the real world of breast cancer before October is done, I share this with you.  I know from my support group that my story is not unusual or exceptional.  The specifics may all be different but the gist is the same.  This all said, I have had some wonderful service as well from some amazing and wonderful people during the last two years.  There are plenty of positives for each negative I address.  The biggest positive in all this is Maria, who is mentioned in the diatribe below.

Side note - I did have my infusions today at my local hospital which was great.  I got to swim before, walk dogs after, and ditch the four hours of driving so that was cool.  Everything was uncomplicated. 

Side note #2 - My mom likes to chat after my chemos and make sure everything went OK.  Her words of wisdom today (very wise I might say):  "Don't forget to take your marijuana!"

If you have the stamina for this reading I will be surprised.  I and therefore my writing was torked by steroids yesterday!

October 28, 2014
Dear Annette,

Thank you for talking with me yesterday.  This letter will likely be more detailed than you are looking for; however I want to emphasize both the length of time that these issues have been going on, and look at two different timelines – the infusion issue and the general scan and other procedures issue.  So… away we go.
In general, the issues with the office at OHSU where I see Dr. Raish come down to a lack of communication with Columbia Memorial, a lack of response to requests by Columbia Memorial (CMH), and a lack of efficient communication with me, which includes two incidents of being treated pretty disrespectfully by Sonia and another person whose name I do not know at the OHSU Oncology office.
When Dr. Raish was my provider at CMH, at the end of appointments either his nurse or a medical assistant checked in with me, confirming the procedures that Dr. Raish had ordered and for when, and most of the time handing me the appointment cards right then and there for those procedures.  If they needed to delay making those appointments for some reason, they informed me when they would call me with the information and then did so.  I have had no such service at OHSU.  Dr. Raish, who is really the best doctor I have ever had (this tirade is not about him) tells me what I will need and when prior to a particular appointment with him, tells me he will order said procedures (e.g. scans, echos, bloodwork), and we say goodbye.  It is never clear to me whether I or someone else should call (and call OHSU or CMH – I never know) to inquire about these procedures or schedule them.  After several phone calls I made attempting to wrangle how it works I was told in no uncertain terms to stop trying to take care of these appointments myself.  Authorizations hadn’t happened yet and in theory the OHSU authorizer Sonia did not want me to have to pay out of pocket.  I believe the phrase “Well, if you didn’t call here so much…..” was used by either Sonia or the other person at the desk, I am not sure. 
All that said, I will share the two above-mentioned time lines of trying to resolve these issues to make very clear what the stressors are for me, a metastatic cancer patient who, as you can imagine, has enough stress already to go around.
August 4, 2014:  Infusion and visit with Dr. Raish.  Jon and I speak to Dr. Raish about whether it is possible to do some infusions in Astoria, as that would keep us from driving into Portland every three weeks when some of those visits do not necessitate an appointment with Dr. Raish.  He says that that should not be a problem, and that he would contact Maria, nurse navigator at CMH Oncology.
I am called by CMH and we clarify that I am not transferring care but hoping just to have some of my infusions there.  I am told I need to have an initial visit with Dr. Lycette to set the process in motion. First available appointment is September 8. I take it and we establish then that I can go ahead with the plan of infusions.
September 13, 2014: I should have had an infusion as we had planned, on the 16th at CMH but Maria informed me that she could not get the authorization without making it a permanent switch and she was rightly reluctant to do that without further investigation.
September 16, 2014: Jon must unexpectedly take another day from work to take me to Portland for infusions.  We speak with Sonia to establish where the problem initiates as if it is with MODA I can make calls and appeal my case with them.  She says that because I take Herceptin, ICORE needs the infusions to be in one place.  She also comments that a change of venue would have to be reauthorized every time.  So, we are not sure if it is actually impossible or would just be a lot of work.  She concludes that I am not allowed to switch back and forth.
October 7, 2014: We ask Dr. Raish if it is a good idea to switch the infusions permanently to CMH.  We are unsure as to how often I need to see Dr. Raish.  We tell him we are not allowed to have infusions at CMH and then have infusions at OHSU on those dates I see Dr. Raish.  He says he has “not heard of this problem in his entire career.”  In any case, we three decide to do infusions in Astoria as visits with him should become less frequent.  He tells us he will go ahead and order the switch.  I receive no other instruction.
October 16 or 17: I call Maria (CMH) wondering whether I am supposed to call and schedule or whether she has received orders to set me up at CMH.  She has not received any orders.  She began then to work on acquiring orders and collecting proper paperwork to set me up for my October 28 infusions.
October 22, 2014: I call Maria, as I am beginning to worry about my infusion date approaching.  She is still attempting to get required paperwork with the signature required by CMH and has not had a response. 
October 27, 2014: I planned to call Maria, as I needed to pre-medicate with dexamethasone if infusions were to happen on the 28th (today – guess what? I am not there getting infusion today, my scheduled three week interval – I am here at home typing this long, long letter instead!).  Maria tells me I can indeed have my infusions on the 28th or the 29th.  I go home and take 8mg dexamethasone assuming I am having infusions today and am just waiting on a call for a time to show up.  Maria calls in the afternoon.  As the process has taken so long and taken us right up to the wire she is reluctant to guarantee that my Perjeta will arrive in time to do the infusions today and it would be safer to schedule for the 29th.  I cry (an infrequent occurrence) on the phone with Maria out of sheer frustration.  I then call Annette.
Basically, in three weeks OHSU people were incapable of sending the order in the first place, making the process a mad rush to the end, and did not send requested information in a timely manner.  I am uncertain as to whether they realize that all of this paperwork is for CANCER PATIENTS who need care when they need it!  The sheer stress of wondering and trying to work through these issues (it should not be my job to do so) is UNACCEPTABLE.
Timeline 2 – Re: scans and echos
I have been perplexed when it comes time to schedule scans and other procedures which I do at CMH.  Yes, scans are stressful enough without wondering whether I am going to get an appointment slot by the time someone at OHSU sends the orders.  I have been more proactive than the OHSU people appreciate, as after a bunch of time goes by where I hear nothing (again, in my experience with Dr. Raish in 2012/2013 this was never an issue – I knew where I was going and when before I walked out of my appointment).  Here is where the comment about me “calling so much” came into play.  However, I feel if I do not advocate for myself orders are not being asked for or sent in the first place.  Here is the latest example of this issue in play.
September 16, 2014:  Dr. Raish wants me to have a CT and an echo prior to October 7 appointment.  He kindly suggests that instead of having the scan on a Friday and having the stress of the weekend that we do the scan on Monday the 6th and then have appointment Tuesday the 7th, getting the results as fast as possible.  I like this idea.  During my infusions on this day an infusion nurse (don’t know name) states to me that she sent the orders for the echo and CT. 
Again, I wait for the calls I am supposed to wait for with scheduled appointments.  They do not come.  I know appointments at CMH will fill and as I need the CT on a specific date and as it is one with an NPO order I want to get in as early that morning as possible, so once again, I begin to worry.  A week or week and a half goes by.  I call radiology at CMH and there is a spot left in the late morning for CT on the 6th.  He nicely puts my name on it while he looks for the order.  No order.  I also schedule echo, which could have been done any time during those three weeks.  No order there. I call Sonia, am scolded once again, as I am not supposed to schedule myself.  I am told it will result in me paying out of pocket and the CT will not be authorized by MODA until the morning of the 6th, 60 days from the prior CT.  I do not understand how it can be scheduled the morning of.  This CT will tell me if my regimen is working or not.  This is a highly charged scenario.  I am told it will work out.  Thankfully, nice rads clerk at CMH is willing to hold the spot.
I call OHSU about the echo a few days later, as there is still no paperwork at CMH.  I am told once again to stop doing these things.  I clarify with the person on the phone that indeed I should cancel the appointment and wait to be called.  Ok, I cancel it.  And wait. 
October 2, 2014:  Afternoon – I am concerned as I have no echo appointment and my options are dwindled to Friday or Monday afternoon.  I call OHSU again.  Yes, I am the crazy lady that keeps calling.
October 3: All day I hear nothing.  At 4:57 I get a voice mail (I was in the bathroom!) that says I have an echo at 11:00 Monday morning, which happens to be the time of my CT.  I call right back but Cardiology clinic has closed.  I have to wait until Monday and hope I can shift the echo to the afternoon.  This rendered the entire day Monday a day of drinking contrast and having two separate contrast IVs. 
October 6: I am sitting in the rads waiting area drinking my two bottles of contrast beverage and I can hear the rads clerk on the phone, attempting to have someone fax a signature so the “patient” can have scan.  He mentions patient is In the Waiting Room at this Moment Drinking Contrast Beverage.  I know this is me as I am the only person in the room, and I am indeed drinking contrast.  More stress.  I do end up getting my CT.
Further, I would like to say that Dr. Raish has greeted me more than once in the exam room and has had to leave the room to “track down” radiology reports.  In my training as an MA I was trained unequivocally to have labs, radiology, anything regarding the patient in the doctor’s hands before he/she went in to see the patient, so he/she could read, process and figure out how to explain the information to the patient. 
I need to tell you I am already stressed about the scan that needs to be scheduled prior to my December 9 appointment with Dr. Raish.  I have no expectation of getting an appointment in a timely manner.  I cannot believe that MODA cannot authorize a scan with a date on it that is within the rules of authorization prior to said date, so that the appointment can at least be set in advance.  Though I am just a cancer patient lying around I still do have a life, and like everyone else I like to have my appointments scheduled as far ahead of time as possible.
Lastly, you should know that because I have had to permanently switch all infusions to CMH I will spend a day going to Portland to see Dr. Raish on December 9 and another day on the 10th at CMH getting infusions.  Ideally, of course, I would do it in one long day in Portland but that is not to be.  I do not think I am asking too much by wanting to stay with my original oncologist, Dr. Raish, through these difficult times, and at the same time believing the system should work as efficiently and conveniently as possible for the PATIENT.
Annette, this is a lot but I needed to say all of it.  Thank you for your time and being willing to listen.  Take care,

Laura Snyder


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