Tuesday, February 14, 2012

Do Gray Skies Always Clear up?

It seems like it has been forever and I guess it has. Everyone has asked what has happened and I thought this would be easiest way to let everyone know. Here goes. The last time I posted was about the time that there was a tumor found on my bladder. The doctor removed as much as he could without doing something drastic that might be harmful. Since October, I have had 2 scans and they both showed that nothing was better but nothing was worse either. That has been good news to all of us even though the cancer is still there.

About a week ago, I started bleeding like crazy, but it was weird because it only happened when I went to the bathroom. Alan decided that I was losing so much blood that I needed to go to the emergency room. So off we went...and I was DISGUSTED because I hate going to the hospital as well as going to see new doctors. We went right back which surprised me and made me so happy with myself. After waiting for 3 hours, that attitude changed quickly. Of course, after getting there, there seemed to be nothing there..of course. Why does that always happen? It's like you can't breath until the point that you are dying and then when you get to the doctor, you suddenly have the clearest lungs in town. The point of this was that they sent me home. I know they thought I was crazy. So, all was well until 3 days later when it happened again. So I called the clinic and they told me to come in again. I was going 210 mph because I sure wasn't going to get there and everything be back to normal. After that visit, they checked me in to the hospital. I was there 5 days and this is what they found after 3 tests and two procedures. After a catheter, I was going to the bathroom with nothing but blood and no one knew why. My blood counts fell from 9.7 to 8.25. After receiving blood I went back up to 10.2 and by the end of the day I was back down to 8.24. This was crazy and everyone was scratching their heads. Bright and early the next morning, I headed back to the operating room to look for something else. The urologist found that the tumor on my bladder had covered the ureters and had I had waited to come in, the tumor would have caused kidney failure. Although the scans didn't show anything, the  time the tumor had definitely changed in size. No way of cutting it out...nothing. The only choice is to remove the bladder. We still were told that it isn't a cure, but only a way to reduce the chances of the kidney's shutting down.

Off to my hematologist. Not such good new either. We talked about the chemo...it is just not working an more. It hasn't showed on the scans that the tumor was growing, plus there were slight traces of cells in other areas. He told me that it was like ivy growing up my body. He looked at me and said, "We are here...This is it.. It's time to give it all we have." I asked him to be honest and he told me that it's do or die. It was a long visit with lots of tears and disappointment. It seemed like all of the suffering that I've done was for nothing. What step do I have when I've done 6 or 7 surgeries, radiation, a recurrence and 2 rounds of chemo, which now has stopped working?

I went back to the surgeon last Thursday and we talked about the bladder and he told me that it would be a very painful death if something wasn't done. The bladder is going in the trash and the surgery is only 3 weeks away! I hate going through something so drastic knowing that I am coming out of surgery with nothing left to do. It could be 3 months, it could be three years. I've stopped chemo and will try and pick it back up in about 2 months. We are going to try a different drug that doesn't cure anything but can prolong dying. I've been struggling with this but each day gets a tiny bit better. And...I've started a bucket list. Alan and I joke around constantly. He said "With my luck, I will spend a gazillion dollars fulfilling your list and then you will live longer than all of us!"  We just laughed even though it is a serious subject.

So, that is it in a nutshell! I'll try and update more than I have been. I just haven't been in the writing mood with everything going on! :)

Wednesday, October 19, 2011

I Don't Want to Leave You Behind

I haven't felt like writing in forever. Lots of stuff has changed over the last month. I guess I'll make this short and to the point. After having the tumor removed on my bladder we found out that it was indeed cancer that had spread. We were all discouraged by the fact that it had traveled. A month later, which was last Tuesday, I had another PET scan. The scan showed that even though the tumor had been removed, the spot still lit up on the scan. It was still there. Monday during my appointment the doctor told me that he was stalling because he had nothing else to give me. He told us that hopefully the chemo I am having can keep things from moving or at least keep it slow. My question was this, "Am I dying?" He said, "We all die at some point." So I rephrased the question, "Do you think I am dying sooner than later?" He told me that he didn't want to sit around and act like everything was fine. His answer, "Yes". The chemo can only hold cancer in a certain spot for so long. I cried when I heard him say it out loud. I have always known it was a possibility but never heard it come out of anyone's mouth. The last thing he said was, "I'm not God, just a doctor, but a miracle from him is the only thing that can change this."  So, each day, sick or not sick, is one more day that I get to spend with Allie Anne. I'm not afraid to die, just afraid of who I am leaving behind.

I get a card in the mail almost every single day. Thank you for all of the support.

Tuesday, September 6, 2011

The Horse on the Ranch :)

I have had the best week! Chemo went well and the side effects were gone within about 5 days.  Alan was out of town for 2 weeks and that was during the time when I found out the news about the other tumor, had to get a transfusion, and then had a treatment. Mom was with me during that whole week and helped me after chemo. Usually, some time late in the day while I am still having chemo, I am called in to see the doctor. I tote the machine with me and go and talk with him. Last week they called me about 2 hours after I started. That means I had just started my pre-meds which include a heavy dose of Benedryl and other things that go straight through my port into the heart and are spread quickly. It's almost a rush and within 3 minutes I am out. I opened my eyes and I was out of control. I stumbled in there and by the time we were done I had told him that his artwork was ugly and didn't match a thing in his office and then I said, "Well, If you like it that much take the horses on the ranch and hang it over your bed! No one wants to look at that ugly crap!" That was after I asked him why he always buttoned his shirt up to the top button..."Doesn't that cut your circulation off because it surely doesn't look comfortable or like you can breathe." Fortunately we have a close relationship and I heard that he thought it was funny. That is totally not me but I guess it was the medication that didn't have time to wear off. At the time I was as serious as could be. Glad I didn't get kicked out of the clinic. Everything about that week was awful.

I was really glad to have Alan home even though I enjoyed girl time so much! We talked about sad stuff and happy stuff. Not that I'm not sad enough, we decided to look up "Saddest movies of all times" and then we wrote down some choices and went to the video store. Guys don't understand this but sometimes when we are sad we do this stupid thing where we want to be sadder I guess. lol. Really? Why do we do that? Are all women crazy or something?  We are down and we just want to cry more. I had someone with me all of the time...especially at night. We actually had a bunkin party one night and watched movies and laughed about old times...it was such a treat. The BEST part was having a clean house...no socks, underwear, tshirts and jeans laying in the floor making me mad!

Alan has a personality of his own. He is very picky about what he eats, everything is plain, he does his own laundry because he like the way he does it better, and he's weird about drying his hands on a hand towel...at HOME. Weird thing is...our house could go 2 months without being cleaned and it would not bother him one bit. So,there was a spotless house when he came home from his trip. Day 1, underwear in the bathroom floor...ok, no big deal. Day 2...the same. Day 3 and 4, after they are piling up, I walked downstairs..."Alan is this a joke? Really? Can you not pick up your underwear and put them in the dirty clothes?" He said he didn't think so, which meant...here's the battle of hard headedness...no matter what, he will not do it just because a big deal was made of it. Goes on...Day 5, Day 6...and I mentioned that it was really about to make me furious! This is 6 days of boxers just piled up in the floor. So the next morning I walked in there and he had them lined up perfectly from wall to wall with the rug in the middle. I stepped over that for two days and he finally gave in and picked them up. Last night, I went down and said, "Thanks for finally giving in!" He was in the yard all day mowing and cleaning the porch off and all sorts of things. I went up there and there are those sweaty clothes, arranged nicely, hiding behind the door.. No Sir! I didn't say a word. I picked those things up, that had been out with him all day through all that sun and work, and stuffed them in his pillowcase rolled up in a ball. He was putting Allie to bed and I kind of forgot about it. I was almost asleep when he came in and got in bed. He jumped up..."ARE YOU KIDDING ME? Why would you do that crap, Summer? That's nasty, this is my pillow!" I just started bursting out laughing....YAY YAY...and the chemo patient wins again! He flipped over as hard as he could and went to sleep. I was so happy to be the winner of the hard headed game! There will be another round sometime soon I am sure. Those are such fun times that we always remember...I've even put salt in his bed after he put gum on the phone receiver. Lol

I scheduled chemo a day late because today is Allie's first soccer practice. I promised myself months ago that I would never let this sickness make me miss any of the important things in her life and so far I haven't. I always show up to the things that are special to her. I knew that if I did chemo today that there would be no way I would be able to see her tonight. I'll be off schedule for a while but I just want to be there for everything she does! There is no point in being here if I never get to see all the things that I enjoy in life.

Tomorrow is the day once again. I hope I don't act crazy to the doctor and knock a hole through the wall or push the computer off in the floor and rip the blinds down. :) Please pray for an easy week.

Tuesday, August 16, 2011

From the Beach to San Fransico

Today as I was getting a blood transfusion, I had a glimpse of what I feel like my last days will be like. I was curled up in a recliner and the only noise was coming from the pumping of the machine. In the tiny room Mom was to my left and she was sitting and reading. It was freezing and I was wrapped up in blankets with a hose under the covers that pumped warm air under the blankets. I fell in a deep sleep quickly because of the medicines that they gave me. The nurse woke me up when she came to check my vitals. After she left my mom came over and in a quiet voice said, "Are you ok? Do you want me to get you anything?" After I said no, barely awake, she leaned over and tucked my covers under my legs and pulled them up right under my chin to make sure everything felt just right for me. Then she sat back down quietly and watched for a few more minutes to make sure that I was content and then looked back down at her magazine. There was something about the quietness and about moms soft voice that made me feel safe. Out of nowhere, I started staring at her thinking that is how it would be when I got really really sick. She asked me what was wrong, because I'm sure I was looking funny, and I told her that I was just thinking. I don't think my time is today or tomorrow, but whenever it is, that's how I want it to be.

My last blog was about the surgery that I would have the following day. The doctor removed a tumor that was an inch in diameter along with some of the muscle tissue of the bladder. That was last Wednesday and we had an appointment to see him back the same Friday. I was completely miserable and ready to get in there to see him and move on. He came in and in a calm voice told us that the cancer had spread. The tumor in the bladder tested positive and the muscle tissue around it tested positive. This isn't a new cancer that started in the bladder, it is the same cancer that I started with in 2006. We walked out and my mind was just racing. I wasn't crying. I wasn't mad. I was just emotionless. We talked about it some and I got sad, but Alan always puts a spin on things that for some reason make it ok. A lot of what he says is just guessing but still it makes me feel better. I felt drained all weekend but was anxious to talk to my oncologist on Monday.

There were only about 5 people in his office when we got there. Usually there are close to 50 or 60 and I was so glad because I wanted to get this figured out and get on with it. Alan wasn't able to go so Mom was with me. He came right in and just hugged me. He slumped over on this stool with his hands over his face. He said, "I'm sorry, I just wasn't expecting this." I told him that this time I honestly thought i was going to catch a break. I thought that this one time it would come back negative. As he spoke, I just smiled and suddenly said, "I don't know why I am smiling, I guess because I don't know what else to do." As soon as those words came out of my mouth he said that I was strong and I was wonderful and one of a kind. Immediately my smile turned to sobbing. I said, "I'm fine, I just thought I was doing so good and now this. I didn't want this to be like this and now I am scared." We marked off my options...I've had 6 surgeries without positive results, had radiation, had almost a year of one chemo and an attempt at a pelvic exenteration. What's left? He asked if I would consider going back to MD Anderson or the Mayo Clinic. We chatted about it but I thought he meant for a fresh set of eyes to evaluate the situation again. It wasn't for that, it was for another attempt at the exenteration. My answer was "No, absolutely not." The surgery is no longer an option. Not now, not ever. The cancer spread into my abdomen wall so unless ever single cell of cancer was gone from those places the surgery would be pointless. My biggest fear would be going through all of that and being back where I started. So, after talking all of this over, I decided to stay on the same chemo for 6 months and see if anything changes or gets better. If not, I'm going to switch to different chemo drugs. I asked him what the next organ for the cancer to spread would be and he said probably my intestines. He said that we would try and find a way out of this mess we are in...not to give up on myself.

I am scared to death at this point. I even looked at papers today for a Living Will. It kind of creeped me out. Allie was doing ballet around the living room and I told her how beautiful she was. She came over and put her hands on my bald head and told me that I was the most beautiful mommy that she had ever seen. Then she said, "I love you so much that if anything happened to you, I would be so sad. I love you all the way from the beach to San Fransico...and that's A LOT." It was sad. I put a smile on my face every single day and laugh and play around but I am just dying on the inside!

Please know that the cards and facebook messages make my day. I know that so many times I don't respond but it really means the world to me. Thank you for your continued support and prayers for our family. :)

Tuesday, August 9, 2011

Another Surprise

Yesterday was the day. My alarm went off at 7:00 and I rushed out of bed. Alan was called into Allie's room at 2 am so I had to go wake him. "Alan....it's 7." Ten minutes later I tell him that it's 7:10. This goes on for about 20 more minutes. I was pacing the floor because it was the day for my tests once again. He gets in the shower just as slow as he can and stays FOREVER! Finally I went downstairs and turned the kitchen faucet on full blast hot water and went up to our bathroom and turned them both on hot too. I didn't want to nag him so I decided that maybe he would just run out of hot water. lol. We got to the doctor and I was told that it would just be a consultation but he decided to go ahead with the exam the same day. I didn't want to do it but was relieved about not having to worry with another morning of pacing around. So, long story short, he found a small tumor on my bladder and I am having surgery tomorrow morning to remove it. I just sat there like he was explaining to me how to get to the mall or something. I was surprised even though my PET scan picked up something little in that area. I will have it removed tomorrow and then they will be able to tell if it's more of the same cancer that has spread to that area or if it's nothing at all. I've convinced myself that it may be scar tissue from radiation but I guess he would've told me that if that's what it was. I probably wont get the results until a few days after the surgery. I will say that if this turns up as something I am just going to feel DONE! I don't really know how to explain what that means other than I'll want to check out from reality! I'll post when I know more. :'(

Tuesday, July 26, 2011

Memories Make It Better

Ok, in my defense I didn't get out of the doctor until almost 6:30. :) I'm kind of up in the air with my feelings right now. Everything looked pretty much the same as last time but an area either in or next to my bladder lit up on the scan. The report said that it was suggested to have the bladder examined. So, our next step is to set up the procedure with Baptist. The clinic was already closed at 6:00 but hopefully we can get it done as soon as possible. They will look to see if it's possibly nothing or if they can see lesions or tumors once they get in there. Let's pray my bladder had a mind of its own on Monday and that everything will be fine.  I don't think I will be fully satisfied until all of that is done and over! I'm trying not to panic until I know for sure.

Chemo brain is driving me crazy! The three of us took a little get away last weekend and every day there were several ridiculous moments. I'll highlight the top three. Saturday I woke up feeling pretty good and happy with myself. We all started getting dressed and Allie and I decided to have a race to see who could brush our teeth the fastest. Going fine....brusha brusha brusha and Alan walks in. "SUMMER, you are using my toothbrush!"  While I start gagging and am totally grossed out he is jabbering, "I mean, how did you not know....I mean, my toothbrush is blue and yours is lime green...I mean, mine has so and so grip and yours has so and so grip." Ok buddy...you haven't used anyones toothbrush, I just used yours so put a sock in it.  Seriously...who is the victim here?  I am hanging over the toilet gagging. I know some people think it's fine and dandy but not me. URRRP...sorry I just got sick thinking about it. lol.

That was nothing. Let's move on to Saturday night. Laying asleep in the middle of the night. Alan jumps up..."Summer...something warm just hit my back." He's up flipping on the light and running around and looking crazy. We had a king bed for all of us and apparently Allie got sick...right on Alan's back. I was so happy it wasn't me, lol, until what happened next. I peeled my eyelids off of my contacts only to find steak and corn throw up all in our bed. Ha ha. So that ended up being my part in this whole catastrophe. I jump up ripping off the sheets at 3 or 4 in the morning. Here's the best part. When I filled out my reservation I just said..."2 adults, King please." So in the middle of the night I called to the front desk..."Ummm...yes...can I have some clean sheets sent up to my room." Lady says "What do you mean clean sheets?" I don't understand why that was a question. What else could I mean? I said "I need clean sheets, a fitted and flat sheet, sent to our room." Lady: "Ooookay...? Do you need anything else?  Do you need pillow cases too?" So, I set the phone down to check them and came back and said, "Well, yes I need one. Well...wait a minute... let me see if there is anything on the other one. Yeah there is some on the other one too." We finally communicated and I hung up. OH MY GOSH! It was the middle of the night, I was half asleep and then realized I didn't tell her that my daughter was sick and it was all in the bed and that's why we needed sheets. I am very conservative and it was obvious after the fact that this lady thought something totally different was going on in room 235! I told the old man when he came to the door but of course Allie was passed out under the comforter so it looked like she didn't exist. I couldn't even sleep after that. How embarrassing? :)  :)

And last but not least, day three. We are on our way home and decide to go through a drive thru because we were starving. Allie wanted McDonald's and Alan hates McDonalds. I pulled my map up on my phone and found something for him and her right next to each other. So off we go. I'm giving directions telling Alan to take exit 39B or whatever it was. "Go left, take a right, blah blah blah." After all, it was right off the interstate so we could be in and out in no time at all. Ten minutes off of the exit we are still looking and turning and he's frustrated and I'm hollering..."It should be right here." It was only 1 mile after the exit and we had been driving more than 10 or 15 minutes looking for it. Alan said, "Just, just, just...just give me my phone! Don't talk, give me my phone. SUMMER, where are we? This is 10 miles out of the way." I was going back and forth with him telling him to look at my phone, my phone cant be wrong. After 5 or 6 MORE minutes, chemo moment, I realized I had my phone flipped upside down! Every turn to the left should have been to the right and so on. We ate our food quietly after that. lol

The point of all of that was to say those annoying "Chemo Brain" moments make me so happy today when I'm feeling kind of uncertain about things.

Please continue prayers until I can work through this procedure. Love you all!

Tuesday, July 12, 2011

Eggs Anyone?

So, where have I been in the last month and a half? Many of you have asked me that question and then I stand there looking crazy because I just don't have a clue. Time seems to fly but when I think back nothing exciting comes to mind. In my last post I mentioned adopting a little dog from the Humane Society. She was in horrible condition but I was ready to save her. She didn't feel well and liked sleeping and being a vegetable so I thought we had something in common. Well, I got her on Thursday, named her Ruthie and then she died on Saturday! I mean...REALLY? I chuckle a little now, not because she died...that's really sad, but because how in the world does this happen THREE times in a row!??!? Alan took her to the vet and came back and looked at me and said, "Ummm...Seriously Summer...no more dogs!" If you invite me over, get a sitter for your dog first..I somehow seem to have an effect on the well being of dogs.

Treatments are still going. Sometimes good and sometimes not so good. We still go every other Monday and every Sunday night I start getting that feeling of standing in front of ten thousand people and not knowing the speech I need to present. My stomach just turns thinking about it. The doctor talked to us last month about the follow steps of my treatment. He told us that he was thinking of three steps and step one would be really long. Step one being chemo every other week, probably for about another year. He didn't touch on the last two steps but I think one is going to be the recommendation of surgery again. That's just something I don't even want to consider at this point. I think about being on the exam table last time and being 30 seconds away from that surgery and the doctor just happened to take a biopsy in the exact right place that called the surgery off. What were the chances of that happening!? Had he of picked another spot to biopsy it probably would've been negative and my life would be changed forever because he would've gone ahead with it all. I feel like I had the chance for that and it wasn't meant to be. I have had several more blood transfusions and they seem to help but only for about a week. They help with muscle cramps, headaches, and the tiredness but as soon as chemo comes back around I'm back to the same ole blahness. I've noticed that it helps to look forward to small events or holidays. It gives me something to count down and I get excited about family and making dorky desserts and pretending like everything is SO exciting for Allie.  

I continue to be completely exhausted and sometimes I am okay with it and sometimes I want to bash my head through the wall! Allie still wants to play ALL of the time. I've finally figured out that playing vet or tornado are the easiest. In "Tornado" I pretend to be a tree that got knocked over and it seriously gives me about ten minutes to close my eyes and do nothing. In "Vet" I'm just a sick bird, dog, cat or elephant and do the same and if I'm not ready to get up I just pretend to have another illness. It's seemed to work so far. :) She'll figure out my tricks soon! She's growing so fast and I see myself so much in her...right down to her hard headed attitude.

 A couple of weeks ago I forgot to take one of my medications. About 9 pm, Alan and I decided to eat breakfast for dinner. He set off for the store and I played on the internet for a few minutes. When he got backed he yelled for me to do biscuits and he would do the eggs and bacon. So, off I went. I was starving and it looked soooo delicious. He fixed our plates and I got Allie's biscuit all ready. Allie and I set off for the dining room...I had her plate and mine (lots of eggs) and my bottle of Gatorade, of course. Apparently Alan yelled, "Did you get paper towels? SUMMER, Did you get paper towels!?" With no response he rounded the corner and saw me falling with eggs in action. Up went the plate and down came the eggs...all over me as I flopped around in the jelly and whatever else stuck to me. About 30 minutes later, I woke up in a chair with different clothes and Alan yelling, "SUMMER, DRINK THIS! DRINK THIS!" LOL. I wanted to punch him when I saw a bottle of Gatorade being forced in my face. I'm going to the doctor Thursday for that and I pray that we can get it all worked out. I think that may be the worst part of it all.