I Forgot to Mention

Oh, by the way....I forgot to mention that I have a new little growth on the top of my foot! It hurts to wear shoes that tie and lay across the top of my foot. We are watching it and hoping it's not a desmoid :(

Story of my life!

Needed Time to Digest

It's been a while since I last posted....I really just needed time to digest it all. I received a call from my primary doctor's office a few days after my last post and they informed me our request for a second opinion at the City of Hope was being denied but that they would grant me a second opinion from another oncologist. How generous of them! It is my right as a patient to obtain a second opinion. I am continually amazed at how they all act like they are doing me a favor. I am thankful we have insurance but for heaven's sake...it costs more than my mortgage!!

Anyway, it took another week before they would bless me with the name of the oncologist they were allowing me to visit. When they called with the name I was just in shock! They were allowing me to see, in all of their generousity, my oncologists partner! Wow! Thank you sooooo much!! That won't be uncomfortable at all!

So I sat on it for a week before making the call. I mean really what do I say?? I would like to see the new doctor but only when the other doc is out of the office so I don't feel like I need to explain to him that I think he is an idiot?!?!?!

My primary said the only way to get another doc was to appeal the decision with the insurance company and explain why this new doctor is not going to be ok. Really? Does conflict of interest mean anything??? I think two doctors in the same practice surely don't qualify as a new opinion, does it?!?!

I called the new doctor. I figure what do I have to lose. So we saw her 2 weeks ago. She agreed to see me on her lunch hour and in a different office than my oncologist I usually see. She really didn't have much to say until we have a new scan done. The last was done in January. It has been 6 months and I have new symptoms that do scare me and make me believe that I have an issue with it growing. BUT....only the scan can tell what is going on with my body.

Two days after I met with the new doc (it was a Friday) I left with Justin to Washington DC for an educational program. We went a little early and explored, he attended the seminar for 5 days and then we headed to New York for more exploration. It was great! Sorry, I get carried away...I'm just so proud of him!! I just got back yesterday and was not able to have my scan done today because they need to check my blood. This ensures that all of my organs are functioning properly and can withstand the contrasting agent they put in the IV at the time of the scan. Once I have the scan done I will need to wait until the new doc returns from vacation and we return from Florida.

She suggested we return to the old onco to receive the results but Scott and I assured her we could wait it out. I think that should speak volumes as to just how much I want to see this old onco....right? :-) She kept repeating that she would recommend returning to him for the results and we continued to re-buff her recommendation. We can be patient :-)

So that's where we are at...I will have a scan next week and wait until we get back for the results. We don't arrive back from Florida until August 9th so it will be a while before we have any answers. She will either say it is the same or it has spread. I pray it is gone but we have learned these things are far too unpredictable and they are different from person to person. Whatever the case is we will be ok. I'm just petrified to return to chemo! I will get throught it if I have to but man! I want to avoid that beast if at all possible!!!

Thanks for checking in....

I'll keep you posted. I may find that they say something to me at the scan that just scares me to death and I may very well go to the old onco for results. I mean really, what can he say to me that he hasn't already....maybe this will be my chance to give it right back to him!!

Still No Approval but a Phone Call

I received a phone call this morning from my medical group. The woman said that she needed some answers regarding my authorization and my doctor's office has not been returning her calls. Hmmm! Well that explains the break down, I suppose.

She needed to know who initiated the request for a second opinion...relevant, how?? And what type of oncologist I wanted to see surgical or medical. Hmmmm! Hmmmm! Doc's office said they already were asked to give a specific doc's name at City of Hope. Really any will do but my primary care doc obliged and gave them a name of an onco they are familiar with.

In her defense the woman on the other end of the phone was very nice and full of empathy for my situation. She said she hoped to be able to call me with a decision today and if not sometime this week. I didn't hear anything today so I expect it will be this week.

Thinking back on it I should have told them it was at the request of my doc, huh? Who am I to request a second opinion???!!! I know it is my "right" as a patient but we all know they don't give a rat's patootie about what I think! Darn! I should be quicker on my toes. Technically speaking my primary did initiate the referral but that is symantics really. Who cares who initiated the darn thing, it's needed! Ugh!!

Nothing...stil!

My doctor called last Thursday to let me know they still have not heard anything regarding the City of Hope referral. I was told he was putting a call into the medical director who makes the ultimate decision. He agrees that this is taking entirely too long. Hopefully I will get an answer this week so I can get going!

I had the bump in my foot looked at...he said it looks like a growth but unsure if it is related. We are watching it... It hurts to wear shoes so I don't know how much longer I can continue "watching" it.

I also mentioned the numbness and tingling I experience every time I bend at the waist. He didn't have much insight except to say that I should hear about my authorization soon. I suppose he feels it's all related and should be tended to by an oncologist.

I'll be in touch!

Still Waiting

I called yesterday but they have not heard any news. She said with a major cancer center such as City of Hope, they do take quite a while to render a decision. I want this so bad...I'll keep you posted.

Still Waiting

I called my primary on Tuesday to check in on the status of my authorization. She told me the insurance company has asked twice for more details of my diagnosis and treatments. The first request came in for more info regarding how good of a lab rat I have been and the second request came in on Monday for a specific doctor's name. Apparently they just put City of Hope and they wanted a specific doctor's name written down. They supplied them with one and now we wait some more.

For those of you counting (and I'm one) it has been SIXTEEN days! I sure hope they decide soon. Call me crazy but I think that since they did not just say no, then there is hope. I may actually get this approved. Wouldn't that be nice??

Oh My Word!! Why Does This Always Happen To Me!?!?!!?

Thursday, May 5th was my return visit to my onco. He was to take the CD of my last scan (1/3/2011) to the hospital review board and have the radiologist take a look at my case. It was my hope that this new, extra set of eyes would be helpful in providing insight and perspective. He did not take the disc in for a second month in a row! So my time and money was wasted again!! I am not sure why it is acceptable for a doctor to do this to a patient, no less an oncologist! I am just as unsure why in the h@#$ I have been putting up with this from him and for so long!!!

I am told to return next month in hopes that the third time is a charm. I am fairly certain I won't be making it to this appointment! Since I was in such a bad mood leaving this appointment I decided it was time to make some noise with my primary care doctor. When it rains, it pours!

I had called on Wednesday to check the status of my authorization for City of Hope and oddly enough they could not find any evidence of it anywhere. It had been 8 days and the doctor stated that I should have it back before I had my onco appointment. The gal took all of my phone numbers and said she would call me back. Hmmm! She never called back. So after my visit with my onco on Thursday I was fit to be tied! Someone was going to hear me out...I was angry!

I placed the call as I sat in the parking lot of my oncologist wanting answers. I was told simply that the authorization had not yet come back. Since the doctor said that I would have it back in plenty of time BEFORE seeing my oncologist I was sure something was amiss. AND I was sure it was due to the person in charge of submitting the authorization did not do her job. After some badgering I was able to get her to fess up. She had not done what the doctor asked when he asked. It was only brought to her attention when I called inquiring about the results. Ah...well at least she owned her mistake but I can tell you I wasn't in a good mood. After I expressed my frustration at not having anyone take this as seriously as it needs to be and the fact that this beast could very well be growing out of control and I have not had chemo since November...... Luckily I was met with a kind, sympathetic, very apologetic human being on the other end of the phone. She realized her mistake (we all make them) and she assured me she would not stop until she got me into another oncologists office as quickly as she could make it happen. She also invited me to call her 10 times a day if that is what I needed to do. I appreciated how she handled the situation and I just may take her up on a daily phone call.

This is my weakness but I believe that she will not forget the sobbing, scared and very frustrated patient on the other end of the phone. I am completely emotionally drained from these damn tumors! I have nothing more to give them! They have taken so much from me and I so desperately want to be done with them. I hope this doctor can get me to something better...someone more knowledgable....and if he can't, the courage to acknowledge he needs help from someone else. To date, I have not received such care. :-(