Chemo Day

Today was long...

I went to bed early "for me" last night, but it wasn't early enough for a 5 something am wake-up for something that I try to tell myself I want to do, but I really don't. In other words, I did not get up as early as I was supposed to. Then I decided it was stupid for Geoff to drive me to UW and then have to drop off the kids, I wanted to go to, so I was late for my scheduled time. Everyone was nice about it and no one says anything, but inwardly I feel guilty and bad.

After complaining yesterday about the lack of consistency in my care lately, today's theme was consistency. When we arrived we immediately saw our favorite valet who went out of his way to say "hi" to both of us. Then we went to check in and everyone recognized us. As I was waiting to have my labs drawn one of the phlebotomists walked across the waiting room and said "Hi Ginny! How are you today?" Then a few minutes later we were waiting for my gyn-onc appointment and one of the MA's/NA's came out in the waiting room to get another pt and saw me sitting around the corner and said "Hi Ginny (I really didn't know she knew my name)."

My appointment went well and we had the same fellow as we had last time. We both think he is really nice, so that was good. Then the attending we met was someone new, but I think I've talked with her on the phone before and she was amazing! She was patient and understanding as I pleaded my case for requesting one specific area for my next PET scan vs. the other.

If you are wondering why I am being "that" patient it is because the first area I had a PET scan in they were really nice and talked to me throughout my scan. They offered my choice in music. They gave me chances to relax and honestly for the hour I have to sit by myself pre-scan they made me really comfortable with pillows and warm blankets. All of this is opposed to sitting in a little area with a blanket in a recliner that didn't really recline and being told to not move, not look around, etc. Then it was off to the same scanner where I had the original radiation mapping CT with the traumatizing vaginal probe and tattooing (if you missed this and want to read more check out Informed consent not uniformed compliance ). I briefly explained this situation and that I was slightly traumatized when my last PET scan turned out to be in the same scanner. Of course, I had to add that scan was the bad scan that showed my mets, so I didn't want to go back for that reason either. I didn't add that they never talked to me, or offered me music, or gave me a chance to move in nearly an hour. I know I probably sounded crazy and high maintenance, but the attending took it all in stride and seemed to genuinely understand and appreciate that I was advocating for myself.

The crummy part is since I had my last scan in the "good" scanner the hospital has made guidelines and apparently my BMI is too high for the "good" scanner. No one really seemed to know about this except the scheduler and everyone thought this was ridiculous. I know I'm overweight, but I'm not that overweight. As Geoff pointed out BMI is crummy way to manage weight restrictions on a scanner since he technically has a lower BMI than me, yet weighs a good deal more than me. Anyway, they were going to try to work it so I could still have the "good" scanner and for me, that was enough. I felt heard and I appreciated that. Really, that is all I've wanted all this time. My NP puts up with my crazy requests and understands the need to ask for things that I can control or will give me some small piece of comfort. Scans can be terrifying things and she understands that it might be better for me if I'm in an environment that isn't "scary" to me. Today I felt like other people got that too.

When we were done talking with the attending and fellow, we were told the PA wanted to say "hi" too. A few minutes later someone knocked on the door and it was one of the social workers. Geoff had apparently called her yesterday to talk about financial options because even though we are doing ok, it is hard. Yesterday I talked more with our mortgage company about their financial assistance program and found out that any of their programs will hurt our credit because they are deemed "partial payments." None of this was disclosed to me before and I haven't consented to anything, but I have a really hard time agreeing to willingly take a credit hit. That seems so irresponsible to me. Of course I started crying to Geoff, so he came up with other options such as calling the social worker.

She had multiple helpful options to take the pressure off here or there. Nothing that was going to pay our mortgage, but definitely things that might help pay a smaller bill or two and could add up. She was really nice and was also going to look into options for the kiddos and get back to us.

Finally we did see the PA. She is the one person that both of us have felt comfortable calling the last few months with all of our questions. We worry that we are bothering her, but it felt nice that she requested to see us today, instead of us bugging her. She wanted to hear about "vagina camp" and what I learned. She talked with us about home births and a mutual midwife friend. We ended up giving her the quick Ella birth story and she was surprised that I didn't need a hysterectomy which resulted in me asking the ever burning question in my mind..."would they have taken my cervix, thereby possibly eliminating all of this?" Her answer? "yes." Geoff and I both just looked at each other and shrugged. After we left he said something about that being something else to stew on and I replied that I have given this a lot of thought. I was always aware that may have been the possibility, but there is nothing we can do about it now, there was no way to predict the future, and honestly, I had a whole year where I thought I was going to be able to have another child. That was happiness for me right there. It would have been horrible to have a newborn and be mourning the loss of my fertility and healing from a major surgery. So instead it is what it is, and for whatever reason, things were meant to happen this way. I really do believe that.

Anyway, after all that we went upstairs for chemo. Again we were recognized by name in the waiting area. Then I had a new nurse today, but she was amazing and I swear she gave me one of the best rooms in the place. I had a comfy chair, a window, and sliding door. This was a good thing because chemo took FOREVER today. I have a great IV but I needed potassium supplementation and it burned. At one point they had my IV fluids turned down to a 100 ml/hr. I was getting a liter or 1000 ml so that would have meant it would take 10 hours, and I wasn't even close to starting my chemo yet. Needless to say we found ways to turn it back up and make it better, but it was nearly 5 pm when I finally left the chemo infusion center. I should have told them to leave my cubicle with my blanket and pillow so I could "reserve" it for tomorrow too, but it doesn't really work like that.

After chemo we picked up the kids and the dogs (2 of the 3...Fern was kicked out of doggy daycare on my birthday for having a not so friendly attitude...behavior appointments are in her future to see if we can help her be comfortable at doggy daycare again or maybe she'll just be a "stay at home dog"). Then I came home and slept all evening. It's 10:45 and I still haven't had dinner and I'm not sure I want to. Geoff is currently on a sprite, applesauce, cereal, bread, and sherbet run for me. Something out of that will probably appeal, and he made me chicken noodle soup earlier...We'll see. Then it will be back to bed so we can do the abridged version tomorrow.