Sunday, April 24, 2011

Back in the Rabbit Hole

When I was very, very little my Mom read to me the full version of Alice in Wonderland. I don't remember much of the book other than thinking to myself something like, "This is very strange and I am not sure it is age appropriate." But that was the kinda kid I was - my poor parents. What I do remember was curling up under the blanket to read it. I remember the smell of my Mom and how warm she was. So, as I curled up next to Nolan last night, he had Alice in Wonderland - the short version. He was at the rabbit hole part (no he can't read, but he is REALLY good and looking at pictures) and finally I was inspired to come back to my reality. Odd that is was from Alice in Wonderland, so grab your blanket (or coffee) this could be a long one. In my last post, I talked about being normal and enjoying my break which ended on the 18th. My break was FABULOUS. I mean F-A-B-U-L-O-U-S. My house was running like a fine tune machine, and I did too much and I got tired and when the rear view mirror of the truck fell off for the last time, the LCD stopped working on the stereo (so you have NO IDEA what you are listening to), the light went out of the tachometer (which it is very questionable on why one would use a tachometer on an automatic transmission truck), and the door to the laundry room broke (again), I was done and luckily went to Maui the next day. Grant and I slept and ate our way through the island. Maui was great - 86 and sunny EVERYDAY. We drank Mai Tai's by the pool, snorkeled with turtles, played, talked, and did very little work. We got into one fight, but that was over ice cream, so really how bad could life be? I was free of the burden of everyday life and, quite frankly, my life. My anxiety was pretty much gone. Grant had it now because of snorkeling - he gets nervous in the water. In one bay, this Nature Conservationist gave us a lecture before we went in the water about where to go, don't use sunscreen, and how VERY HARD IT WAS TO GET TO WHAT TO SEE. I was like (in my head), "Dude, SHUT UP!" and formulating my discussion with Grant silently. Grant looked at me with his "look" and I said, "The white boat isn't that far. It is a calm bay - look at it. The sunscreen we use doesn't have the ingredient that is bleaching coral. (I am married to an Environmental Engineer. I actually do proactively do this stuff.) And look out there , see the 80 year old with the noodle underneath him? He is out there, so you can too." Grant nodded, we went, and he did great. In fact, he was so fired up, he was researching sunscreen for the next four hours, he found a "turtle beach" that we went to the next day that was ROUGH and I was thinking, "And you were nervous about yesterday????" He is a complicated man sometimes. Anyhoo....I had my moments that I remembered the clock was ticking. We got through them. We got home, went to the T-ball Jamboree, visited with family, and got ready for the 18th. Monday morning went well. I drove in with Elaine and we were laughing, I got out of the car and went in the first doors, went through the second doors and stopped. Angie, who works at the front, saw me. I must have given her the Grant "look". Gently, she hugged me and I told her I was back for chemo and she said, "Okay sweetie, I will be thinking of you." Up the stairs, check in, labs, game face, nurses, waiting for the doc, doc comes in, we start discussing what we are going to do, he turns to the computer with me a little behind him and the list of my meds and pre meds pops up on the screen. It fills the entire screen. He almost merrily goes down the list, murmuring about my labs and less of this and my counts are still a little down, but okay, and then he turns to me and says, "Okay!" and then "okay......." I was silent, and the tears were streaming down my face, he is looking for the Kleenex box and I say, "I am okay. I am just mourning my break. I was a really good one." He responds, "You needed a good break." I wipe the tears away and go upstairs to treatment. Treatment went well, I had to listen to the iPod, I shook just a little, I was doing pretty well, and then they gave me a new pump. An automatic pump. I told the nurse that I wasn't sure I could do that - the change threw me, but after a call to the doc and some time with it, I put it on. It was much quieter than other auto pumps but there is no hiding this thing. Can I look any sicker? You get it with a fanny pack or shoulder strap - fabulous. I took both and in the end it was fine. What was nice was that you know EXACTLY when it is done. That is pretty cool, but at night you can hear it dispense and that is really uncool. On unhook day, I was a mess. Karissa was making me laugh, but it was hard. The nurse made me go see my oncologist and, as I sat there, I started to cry oncologist walked in and said, "How goes the fight?" I was blurted out, "My Mom thinks it is hormonal!" (I was taken off my hormone replacement after surgery because of where I put the hormones. Yeah, up there, so I have had no hormones for a month. Now, for those of you that are scared of the hormone replacement, really, step back, think about my situation, and remember it is not a very big fish. Kinda like when I was in Maui eating TONS of Ahi and thinking, "Radiation? Who cares? I glow REGULARLY!") My oncologist turns and says, "Hey, your Mom may just be right this time!" (My Mom asks him questions regularly that he shoots down in a very nice way.) So, down to the pharmacy for hormones. Karissa and I wait. The CHILD behind the counter says, "Do you come here regularly because I can't find your insurance information." Okay, remember, I JUST got done with chemo, mentally I am DOWN the rabbit hole, I want to cry AGAIN, I am feeling guilty for all the people that take care of me, and I say, "Yes, I do and you should have it." "Are you sure????" she replies. And seriously, if Karissa wasn't there I probably would have said, "OMG this is the CANCER Pharmacy???? I DON'T HAVE CANCER!!! WHAT WAS I THINKING?!?!?!? SORRY TO BOTHER YOU." But I didn't. She then said, "Oh....there you are....I still don't have your insurance info.....looks like we have you a discount on your last Rx." I said, "That is interesting because I came in two weeks ago for a $3,700 monthly Rx that I got for $12. That is quite a discount." I gave her the card and she got my Rx without sharing anymore. I got home, I took my pills, cried, saw Mason, cried, talked to Grant, get the picture. In fact, I cried so much that Mason wrote about it in his story at school the next day right after the sentence, "I was so excited to see my Mom and Dad." What do you think that made me do??? YOU GOT IT!!! And with a thud and a large puff of dust, I hit the bottom of the rabbit hole...making myself eat anything, crying, voices in my head of me apologizing to my Mom for having to spend her retirement taking care of my kids and her saying, "Angie, what would you do if one of the boys was sick?", looking at the rear view mirror on the floor of the passenger side of the car, not being able to close the laundry room door, and exhale......letting myself feel the bottom again and grabbing onto the memories of my break when I could taste food like the first really good piece of fruit from summer when the fruit juices spill out of your mouth, down your hand, onto ground as you jump away from it. LONG PAUSE. As I wake up out of this fog, I check myself (I know - you are like, "FINALLY!"). I realize that in my rabbit hole I have a lot of ropes coming down on me - doctors, friends, food, help calendars, prayers, breaks, and family. Up we go again...... Forever thankful love, Ang

Tuesday, April 5, 2011

Last Weekend

Last Saturday, I looked at Grant the way that I look at my kids. You know how you can look at your kids and you know if they are hungry, tired, or sick? Well, that is what I did to Grant. He was exhausted. The guy has a bit goin' on. Let's see - he has a company with his buddy, they have the great problem of having a lot of work, he is Mason's T-ball coach, and he is the husband of a cancer patient (that is me JUST in case you didn't remember). Here is the good part about....but first, dial back a couple months with me.....past my disappointment about my margins.........past my guilt for not being strong enough to do regular chemo and doing chemo light.....past my disappointment that I am not DONE yet.....January.....blot clots in my lungs....blood thinners.....we continued were monitoring my butt and doing chemo for the last bit in my lungs. Then, the allergic reaction, chemo light, the clear lung scan but growth in my butt....pneumonia in my lungs.....pleurisy......more growth in my change focus from lungs to butt. Butt operated on, butt "cured". Docs lose interest in my butt, refocus to my lungs. Remember, I need two clear scans to be excused from treatment. So, while I continue to heal from my surgery which is going quite well actually, I get a break from it all AND the weird part is back in December I booked a trip to Maui for this month. I asked permission from my oncologist and he said, "I can work around that." All I have talked about is Maui with Grant. So, while my oncologist was refocusing on my lungs, I was making sure he remembered my trip with Grant WITHOUT kids and "healthy". So, a couple weeks ago we are talking and I say, "Okay, so I assume we are going back to chemo to finish up the lungs (and now it can't hurt whatever remains in my butt)." He replies, "Yes, if the transanal works, we can start chemo on the 18th, (Note: That is after I come home from Maui - well done!) if not, the 25th. I love it when he remembers my vacation schedule! I will be back on full blown chemo with the pump for two days, but my premeds will be reworked so that I don't have another allergic reaction. Also, I am not allowed to do chemo is my oncologist is out, on vacation, etc. He wants to be in the building when I am doing this because of what happened in January. When I stopped by his office after my filter removal surgery, I said, "Okay, remember, I am now on a 2+ week vacation to "heal" and I will start chemo on the 18th." He said, "But what will I do without you?!?!?! I am going to miss you." I gave him two gluten free chocolate chip cookies and said, "Here, these should help, but I gotta say, I ain't gonna miss you even though I am fond of you." (smile) Hug. BYE BYE! Okay, back to last weekend. I haven't had any procedure since Thursday the 31st of March and I am not scheduled for anything until the 18th. Because I have been off chemo, my energy is coming back. I got over a cold by MYSELF - no drugs. I have gone to PTA meetings, Kent School District Budget meetings, bookclub, etc. But last Saturday, my Grant needed me. There is a switch. So, I gave him the weekend off. I took the kids on work errands and a family event on Saturday, I took them on family errands on Sunday, I covered for Grant to nap and rest. By the end of the weekend, he felt a lot better and I felt, well, fine. I cooked a turkey (I wasn't kidding when I said I needed to clean out the freezer!). The house smelled of my cooking, the car never got cool because we were buzzing around, I started looking forward to Mason's spring break from school because we could go to the zoo and the Pacific Science Center and I wasn't scared to do it by MYSELF. No anti anxiety pills. No worries. No, well, complicating factors that a terminal illness brings. At the end of the weekend, I asked Grant how he felt and he said, "Guilty." I kissed his head and replied, "I don't want you to feel guilty. I want you to feel better. Just think - this is what it is like for normal folks." Realizing, we both have NO idea what the term 'normal folks' means anymore, we kinda went, "Uh." So, am I past my disappointment of my margins? Yes and you want to know why? Because I got last weekend, I have this week with my boys, I got pajama day today, and I get Maui with Grant. Translation - I got NOW. The 18th will come soon enough, so for the next little while I am going to try and take a break from my condition. T-ball has started, Grant and I are going to Maui for four nights, etc. The freezer is getting cleaned out, and I am packing it back up with easy things during my next go around. Life normal - as long as I can have it. Until the 18th then........Love, Ang