So Monday I ended up staying home. I liked staying home. I was tired and fighting fatigue. In addition, I was having some leg pains that made my legs feel like rubber. I wasn't sure if I was going to be able to stand, let alone walk. But I took some ibuprofen and the pain went away... just 400mg. Nevertheless. It was nice to be at home and not have to be feeling ill to the point where you're wondering when the nausea was going tos go away. I even managed to get in a little grocery shopping in. Monday I also took Amelia to her dentist appointment. She may have a little cavity. Boo. But she makes such a fuss about the x-ray machine that we didn't get any x-rays. But she did get her strawberry polish and flouride in. She did really well.
The title of my blog entry is "Who's calling?" My phone has been ringing - seems like - non-stop. I've got doctors offices calling me. And I don't even know why. First up was a call from the scheduler to tell me that I have new appointments and that if I had any questions or issues to call. Thank goodness I looked at my My Chart account for OHSU and saw that I have three tests scheduled for Tuesday, May 15. It all starts with a MRI. Next up, a mammogram at 1:20p, followed by an ultrasound at 2p. That's just on one day. Then they scheduled me with Dr. Naik for my surgery on Thursday, May 17 with the reconstruction surgeon, Dr. Thacker right after. Yay! I can't believe that I am finally here at this point... scheduling my actual surgery. It seemed like a millennium away. That was January 26! So happy to be at this point. I didn't think I was going to make it.
The next call I received was from a Maryann who said that she's waiting for a referral request and to give them a call if I had any questions. She left a voicemail. She didn't say from what office or who referred me to that office. I was clueless. So I called the number and the receptionist said that it was Dr. Dennis Bley who was the referring doctor. Really? I haven't spoken to him since January 13th. So I text his wife and said I was confused. I had called his office, but he's not in on Monday and there was now way of being able to leave him a message. So his wife, Desiree (who you may remember is my ob/gyn) asked him if he was doing something. He was clueless too, but said he would pull my file when he got to the office the next day. I didn't think it was him. The receptionist did say that I was calling the gastrointestinal group. Maybe it was to see a specialist because I am at a higher risk of getting pancreatic cancer? No clue. Desiree thought they wanted to check my hiney! Maybe do a colonoscopy. Heck at this point I wouldn't put it past any doctor.
Then while I was on the phone I got another call from OHSU. This time it was the bone density clinic. They wanted to schedule an appointment with me to check my bone density levels. I go in on Thursday before my last chemo-sucky treatment to get three low dose x-rays. No poking or prodding! I like that!
So I was doing the waiting game. In the meantime, I emailed the nurse navigator, Christine and asked a couple of questions... where am I meeting Drs. Naik and Thacker? Can I get an oophorectomy at the same time and is there a good doctor? And lastly who the heck is calling me from the gastrointestinal group.
Move forward to today. I get out of work (by the way I was having leg pains so I took two more ibuprofen - did the trick) and I have two messages on my phone. The first was from a dermatologist. And the second was from Maryann asking me to call her to set up an appointment. However, she again failed to leave information about what clinic and what doctor. This was getting very frustrating. So while sitting at Aamco to get my care read (check engine light went on... more later), I called the OHSU Breast Center to see if I could get a hold of Christine to find out who the heck keeps calling me and why. Amanda at the clinic says that when a department gets a referral, they must call the patient within 48 hours and if they didn't get anyone, they have to call again. If no answer, the third point of contact would be by letter. Sheesh, I am going to get more harrassing calls? In any case, I went to Becky's to pick up the girls and that's when I got a call from Christine.
Answer to Question 1. I only have to go to one floor and Dr. Thacker will come and see me. Christine said that she's on rotation on that floor and that if I need more time with Dr. Naik, then I can take my time. I have a set 15 minute appointment with her. Then at 2p it's with Dr. Thacker. Okay, that's good. Question 2. Christine said that I would have to talk with the two surgeons to see if they are comfortable with a third doctor doing an oophorectomy on me. That's a lot of surgery at one time (I agree). But I want to throw it out there. As for talking with a GYN oncologist or gyn-oc, someone will call me from the Breast Center to set up an appointment for that. Question 3. Christine said all these calls are coming from Dr. Samson the genetic counselor because of my BRCA2 results. I figured that was the case, but no one ever told me they would deluge me with all these doctors. I asked her how urgent it was for me to be setting up these appointments. There are just way too many right now. Christine said that it's for preventative care and that I can do them before surgery or I can do them after surgery. She said that it's not imparative that I have to do them right away and that I can take my time. She just said that because of my positive test, the doctors just want to see me. All I can see is "I want your $50 co-pay and then just tell you that I don't have to see you for another 5 years when you turn 40." I know they mean the best for me, but with all the other crap I have to get through, give a girl a break. Christine said she knew that there was a lot that I was going through right now and I didn't have to jump on everything. Heck, I may want to talk to a different dermatologist. She did say that the gastro clinic was for my increased risk of pancreatic cancer. I said, okay. So what I plan to do is get through this last round of chemo and my surgery before I start on the next process of this preventative care. It's not like I should have pancreatic cancer now. The PET scan showed no cancer in any of my other organs, and with having neo-adjuvant chemo-sucky, the cancer should not have spread to any other organs. So Christine agreed with me to just wait until I am more comfortable with where things are headed. She said that the doctors are just going to go over my increased risk probabilities... duh.
So back to my car issues... (will it EVER end?) My check engine light came on a few weeks ago on my way to chemo-sucky. The car started to ride rough, but only when at stop lights or idling. Then the light went out for a little bit. Then it came back on. At first we thought that there may be water in the gas. Nope. It wasn't that. To make a long story short, I took it in today to get the car error code read. PO302 with a cylinder #2 misfire. They wanted to take my car apart, but I said I wanted to talk to my husband first. Actuallly, I wanted to talk to my brother in law, Chris. So it looks like I will be driving it down to Albany this weekend so Chris can take a look at it. It could be wiring, coil or an injector. Who knows. Just pray that it's not overly expensive.
Fingers and toes still tingly.
Here are some pictures I meant to post earlier:
Me and funny man, Jon. Look, we're twins!
This is what my port looks like when I've got chemo-sucky going in.
If I remember, I'll upload a picture of my port without a needle stuck in it. In addition, I've got a picture of my $6000 shot (of which I now waste $2,000 of it)!
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