This past week was one of doctors’ visits. On Monday, there was none, but I was just tired. This may have been because I tried to wean off the pain pills too fast. Yes, I tried to do that again. Did I mention that doctors have yelled at me for this?
Tuesday was a visit with my ob/gyn, Dr. Compassionate. He is the same doctor who did my D&C. Seriously, this man has an amazing bedside manner. You may cry with him, but it is truly with him, not because of him. Dr. Compassionate said my stitches were healing beautifully. As a matter of fact, I am healing a week ahead of schedule. I still have about 3 weeks for the internal stitches to heal. He did take me off of all restrictions that don’t involve internals, though!
Dr. Compassionate asked us about when chemo was starting and getting my port (more later) put in. DH thought he was the gating factor, but, Dr. Compassionate pulled back from that question to make it clear that that was for Dr. Professor and my gyn/oncologist, Dr. Sunshine, to decide. We told him the plan was to start chemo in either the first or second week of June. Before we left, Dr. Compassionate gave me a hug. From what MIL, the nurse, has said, our situation has shaken a lot of the medical personnel who know about it.
Wednesday was the day we met with Dr. Perfectionist, the general surgeon. He is an Iraqi doctor who refuses to speak anything but English – even to his Arabic patients! He also has earned the respect of all of the other physicians and nurses around him. He is the person they all say to go to get your port put in. And, yes, my MIL knows him well and warned him that her daughter (in-law) was coming to see him for a port.
What is a port, you ask? Well, since I have the world’s lousiest veins, the doctors all feel that it would be best to make it easy to access a vein for both getting blood and getting the chemo into me. The port is a device put into the upper chest that accesses a vein for just that purpose. I don’t like to think about it much. I’m scheduled to have it put in on Friday, May 29th.
I have to say, however, his office staff leaves much to be desired. Both were rude and gruff and could not handle the little insurance blip we are dealing with. You see, earlier in the day, my DH had gone to the pharmacy to get my l.ovenex prescription filled. Now, the pharmacy guys were great, but, the insurer sent them a letter on the medical but not the pharmaceutical benefits. As a matter of fact, they gave them the wrong number for the pharmaceutical benefits. The letter they got faxed to them had all of the things a medical practitioner needs for billing. We gave this to the woman and she was like – this is not good enough. Thank goodness my MIL was there!
This woman was also being a pain about interruption of coverage. The date of end of coverage for continuation of care without pre-existing conditions is 63 days in my state. We were well within the time and had no actual interruption in coverage. (Due to my allergies, I am really familiar with this and have gone without things to make sure I have never had my coverage interrupted.)
Thursday we met with the gynecological oncologist (gyn/onc), Dr. Sunshine, for our post operative check-up prior to starting. His office, unlike Dr. Perfectionist’s office, were not phased by the insurance insanity that has ensued. The receptionist called and despite having to inform the person on the other end that she had just asked them that question and repeatedly having to explain that she was in another state, was able to get things in order for our visit.
We went over the chemotherapy stuff again, and Dr. Sunshine mentioned something that didn’t register until today – one of the drugs is from the yew plant. I didn’t think anything of it until I went Friday to get paint thinner and saw a yew plant. It’s an evergreen. I am extremely allergic to most trees – including evergreens. I hope the substance does not contain the protein I react to. (I will be calling my allergist to make sure he has been consulted. For that matter, before this started, I was supposed to see him again.)
Funnily, when we asked if Dr. Sunshine had consulted with Dr. Professor yet, he mentioned that when he called Dr. Professor, Dr. Professor told him he needed to know he was at a card game in Las Vegas. There is a legend that Dr. Professor has been banned from various casinos around the country for card counting. No one knows the exact veracity of these rumors. Dr. Professor is smart enough to know how to count cards without being caught, I think.
Now, while Dr. Sunshine is awesome, I’m not so sure about his Nurse Practitioner. She was sent in because I asked about counseling and support groups. Specifically, I do not want to hear about people who are surviving for their kids. DH and I went through why we needed someone who had dealt with infertility. Not 10 minutes later she was talking about young women who had infants and small children. Hello? You are a gynecological oncology nurse. You should be familiar with psychological issues surrounding infertility. I nearly lost it completely when my voice broke and told her, “I would give every minute I have left to have had a child.”
The Nurse Practitioner also kept pushing how the group therapy would be a good thing because I now have a life-threatening disease. See, there is a disconnect for most people here. My fellow anaphylaxis sufferers, which is more predictable and manageable? Anaphylaxis or treatable cancer? I have been living with a life-threatening disease where leaving my house puts me at risk of dying because I don’t control my environment since my late 20s. This cancer is, to my mind, a new, minor change.
Now, I realize that non-allergists and non-anaphylaxis sufferers don’t really get that life-threatening part. The thing that bothers me is that I can’t seem to communicate that walking into an unknown place could lead to my immediate death if they are popping popcorn and I don’t exit fast enough. Cancer looks simple in comparison. Annoying, but simple. Perhaps I am weird in my outlook here, but the first time you come close to dying from something innocuous, you start looking at life completely differently. (Yes, DH has pointed out the worry with reactions to the chemo drugs. Rapid immunotherapy or complete depression of the immune system, anyone?)
After seeing Dr. Sunshine, we went to Dr. Professor’s office because of insurance issues. Insurance did not want to cover my l.ovenox. I have two blood clotting disorders – double heterozygous MTHFR and PAI-1. I’m having a port put in and it is important a clot not occur once it is there. I’m also recovering from a major surgery that endangers me in regards to clotting. L.ovenox is sort of important in these situations.
DH and I knew we chose the right location for chemo when they didn’t even blink and described exactly what was going to need to happen. Of course, I found out that no one had written the giant red letters about popcorn on my chart yet. They were shocked. Yep, I know it is rare. I also loved how they looked at me like are you kidding when I described my various (bad) ER experiences where I have been told you can’t pass out from anaphylaxis. See, your circulatory system stopping tends to cause a loss of consciousness in most people.
I made my post port / pre-chemo appointment with either Dr. Professor or Ms. Clarity. When they asked if I had to see Dr. Professor I said I thought it didn’t matter since Ms. Clarity ran the office. My meaning that she kept care of the things he doesn’t have to be involved in. The checking of a port is pretty straightforward from my understanding unless there is a problem. Good PAs and NPs – especially those in specialties – know when they need to get the doctor involved. They implement with more autonomy than an RN, who in turn, has more autonomy than an LPN, etc. Offices are run by support staff, not doctors. Doctors need bandwidth to keep up to date on treatments, diagnostic changes, surgical procedures and their own professional stuff. I don’t want them doing stuff that can be done by a PA, NP, RN, LPN, NA, etc.!
Friday was a day I got to sleep in and do a little shopping. I went to get paint thinner as my mom – who is staying to take care of me – wants to paint my front door for us. It does need it and she is better at it than either DH or me! We also went to K.ohls where we both bought some clothes. She did better at the clearance rack than I did. I got tired faster than I expected. That part sucked.
On the medical front? DH got my drug refills and found one of the drugs went from a 30 day supply to a 28 day supply and went from a 40 USD co-pay to a 110 USD co-pay. He has been rather grumpy since. (Can’t say I blame him.) Really, something has to give in regards to this. Thank goodness we have insurance as the drug in question is 4,000 USD for a month’s supply sans insurance. Something has to change in the USA in regards to our medical system.
I meant to blog these each day, but, for some reason, tended to be tired by the end of each day. So, you get to suffer a rather blow-by-blow of the week and its jumble of emotions.
I am also way behind on email and apologize to those who have not yet heard from me. I am getting there!