We left for the airport at 11:30 Tuesday morning, no traffic, short lines going through security, everything was good. Flight was delayed for 45 minutes but not really a big deal. I was so excited to go to Chicago I had forgotten how afraid I am to fly. It wasn't until the plane started to take off that I was reminded. Taking off and ascending is the worst part for me. After that I'm fine for the most part. I try to just pretend I'm on a train.
We arrived at the Chicago Midway airport, collected our luggage, no problems. Our instructions were to call the treatment center after going to baggage claim and they would send a limo for us. When they said limo I assumed they meant a four door sedan, but no, they actually meant a limo. So we rode from the airport to our hotel in a limo, which was about an hour and a half ride. What I didn't realize until the driver informed us was that the Radisson we are staying at is in Kenosha, Wisconsin. The treatment center makes all of the flight and hotel arrangements in case you were wondering why I didn't seem to know anything.
The hotel is about 20 minutes from the hospital. There is a shuttle, provided by the hotel, that leaves every hour for the hospital. They will even take you to local restaurants, shopping outlets, and the Walmart. You just have to choose the shuttle ahead of time to make sure it isn't filled.
There is a lovely restaurant in the hotel. It even has a gluten free menu. It's a bit on the pricey side but very convenient. We had dinner there last night after getting settled into our room.
This morning, which is Wednesday, was my first day at the treatment center. We got up at 5:30 (6:30 Pennsylvania time) and got ready so we could leave on the 6:30 shuttle. My first appointment wasn't until 8:15 but we wanted to eat breakfast at the hospital. You get $5 per person to spend for breakfast and $7 per person for each lunch and dinner. So unless your eating a whole lot you can eat for free.
First, we met with a man in registration. He walked us through all the paper work, explained the insurance ins and outs, all that happy stuff.
Then we were escorted to my next appointment by some lady. I don't remember her exact title but it's her job to get us to where we needed to be so we didn't get overwhelmed or lost on our first day there. Maybe someone called ahead and warned her that that was a very real possibility with me.
So everything was okay so far. Everyone we had met was very friendly, very helpful. I still had hope at this point. But it was only around 9:20 in the morning. So much time for things to go wrong and they did.
I was taken to an exam room where I was to wait to be seen by several people. I was scheduled to meet my patient navigator, a nurse who would take my vitals and go over my medical history, and eventually a doctor, not an oncologist but an internist for an initial exam. This was the first of my disappointments.
When I eventually met with the doctor after waiting in this small exam room for over two hours, she basically reiterated what my doctors in Pittsburgh had told me, that chemo was a must. That because my specific type was so aggressive and because I am so young that it was absolutely necessary to have chemo. At first I was very saddened by this. Then I reminded myself that she is only one doctor, not even the oncologist, and she is going off of nothing but my medical records. So I decided I wasn't going to let what she said bother me. She ordered blood work and an EKG and she went on her way. Someone came to draw my blood. Then someone else came to do an EKG. Then after a grand total of 3 and 1/2 hours in this very small room I could finally leave.
The plan was to go eat lunch and then return to the same floor to pick up a schedule that they would be working on while I was eating. This schedule would have the days I would see the nutritionist, naturopathic doctor, oncologist and a surgeon. Then after I see all of those people they sit down together and discuss a plan for me.
So I went and ate. And when I returned I waited and waited. I waited for an hour for the lady who had been working on my schedule. Keep in mind that I was originally told to plan on the initial visit being 3-5 days. Then I was told 3-5 business days which is completely different. When I looked at this schedule there was basically nothing scheduled for tomorrow, Thursday, the nutritionist and naturopath were scheduled for Friday, and then the oncologist wasn't scheduled until next Thursday, over a week from now. Then she added that she wasn't able to schedule an appointment with the surgeon yet but that she hoped she could get me in for the Friday after the oncologist. REALLY?!!! She added that she wasn't sure if they would have me go home in the mean time and then fly back out or what they would want me to do. I should also mention that at some point during the day we learned that they only pay for the caregiver's plane ticket the first time out. After that they will only pay for mine. Which was not what we were originally told on the phone.
By this point I had been at the hospital for about 7 hours and had accomplished basically nothing. I had blood work and an EKG. Oh and don't forget the useless doctor that I didn't ever want to see again. I'm missing seven days of work for this trip that I won't get paid for because I have already used all my personal/sick days. Bob is self employed so every day we're here is lost money for him too. And now they are telling me that they can't even schedule me with the oncologist and surgeon till next week. So please tell me again why I'm here?
I was beyond irritated. I usually don't voice my frustration, but this was too much. I wasn't going to let this go. Bob was irate. He had decided to excuse himself from the conversation when she was going over the schedule which was probably best.
At this point she had now left to go make some phone calls to see what she could do. It was then another hour before I would see anyone again. This time my patient navigator had come out, apologizing. Bob and I both explained to her what had been told to us over the phone during that initial conversation and that none of that seemed to be true. I said I felt like it was all smoke and mirrors. And I asked if their telephone intake personnel were paid on commission. I was talking very nicely to her but it was very obvious that I was upset. She kept apologizing and told us we needed to complain to customer relations, which we will, only Bob and I both thought it would be better if he didn't talk to them that day because of how mad he was.
She agreed to keep working on the scheduling problem and eventually called me to let me know I would see an oncologist tomorrow, Thursday. It's not the same one I was originally going to see which was a breast specialist, so I'm not sure what to expect. They also changed my appointments with the naturopath and the nutritionist to tomorrow. I'm hesitant to be excited about the rest of this trip and I am really not feeling hopeful that anything good will come out of it.
I should have known that it wasn't going to be a good day when the hotel hairdryer broke while I was fixing my hair this morning...oh yeah, that's right. I forgot to mention I still have my hair. It never fell out.
I'm trying to look at this situation in a more positive way. ALL things happen for a reason. And even if I don't know what that reason is now and maybe I'll never know, I have to believe that this is what was suppose to happen.
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