Thursday, August 28, 2008
Monday, August 18, 2008
The magic wand is mine of course. Zane just wanted to borrow it for some magic he needed to do right then! (I got the magic wand along with a tiara and "rose-colored" glasses from Christy when I was diagnosed. Maybe some of you got the wonderful pic of me all dressed up from Paul on his phone!)
Really, he started doing this all on his own. Today, he started saying his name at the library and this couple just smiled big and thought it was the cutest thing!
Sunday, August 17, 2008
We really enjoy comments. I am certainly not begging for them but I am requesting them. I love doing this blog, but it is quite a lot of work. When I don't touch it for a little while, many folks come out of the wood work and start to wonder if we are ok. We are absolutely touched by that, but really, I didn't know so many people looked at this until I was not posting for several weeks.
SO... feed me and I will thrive...
I have a couple people who always feed me. My Nana in California who comments on almost all of the post and our friend Beth. I love hearing from them when I put fun things up! It makes me smile and it inspires me because then I know that someone is watching!
I would love to know who of you out there check in and see how much fun (and the not so fun times recently) we are having.
This is all part of my "self-prescribed" treatment plan...
Take part in my recovery...
Comment and tell us how weird or off the wall we are...
And then... I have to share our super deal at the dent grocery store because Paul and I still can't get over it! On the way home is a grocery store that sells "dent" items. It is too far for me to go there often but when we are up at Grandad's it is normally on our way home. This time I actually got to stop. I did a super speed shopping trip because Dylan was with us and Zane was sleepy but I got so much stuff for only $40 including a bottle of wine and a super giant bottle of organic tamari, a King Arthur cinnamon bun mix (never tried this stuff) AND they had my granola!! The best part is that the store often has a good selection of random organic brand snacky stuff. Check out the spread we had when we got home... now I only have to find a place to put all of this stuff!
Can you tell I am in my "good" week? I started feeling better on Thursday or so. I still get really tired and sooooo achy. And I don't know what it is about my feet but the bottoms of them are ALWAYS swollen and so tender. By the end of the day I just can not bare the thought of getting up yet another time to walk around. BUT, overall I get more energy compared to the week following the chemo and I get happier. I can better deal with things. This is good. We all have more fun on the "good" week.
Some Friday night fun (after we had a great dinner with our friends Tiffany & Brianna). The video is really dark but if you can look hard enough to figure out what we are doing, it is pretty funny! (It involves Dylan's leash and Zane's binky!)
Friday, August 15, 2008
Had a great morning today. I have been trying to come up with things I can do with Zane while I have my good days that requires optional spurts of energy from me and doesn't take too much time to prepare for, out of the sun (I really can not handle the sun right now!), etc...
This morning we went to our neighbor's house for a swim. It is something that we have never taken advantage of before but I thought how nice it would be to just suit up and then walk next door. Then, when all done we just walk 20 ft. home! It was great! He had a blast!
Then we came home and I made him a yummy lunch to have while watching his Sea Tunes for Kids video. Yes, we do do the TV thing from time to time. I also have to say that since my treatments have started, we have done the tv thing a little more. We are a bit picky though. We are big PBS fans and anything else has to be debated...
The Sea Tunes for Kids video is one that he got from his Aunt Maggie. It is great because it is just video of real sea animals that goes along with music about sea animals. Very simple and he loves the music and seeing real animals. Especially the octopus!
So, then when he was all finished with his lunch he decided he needed some time in his crib... with his binky. This is where we try and keep the binky use. The crib and the car. So, sometimes when Zane decides he needs some quiet time, he will ask to get in his crib. He will hang out there for 5-10 minutes playing and getting some binky time. I usually leave him and tell him to call for me when he is done and wants down. Well, this time, I was gone for a while and realized it was really quiet in there! I went in quietly to get a peak at what he was doing and this is what I found...
He was passed out! He just konked right out! Well, that was easy! Ha!
Wednesday, August 13, 2008
It all started with a book Christy spotted at the library when we were there...
Chuck's Band by Peggy Perry Anderson
Christy told the story and the rest of us played along! The kiddos got so into it. Just before I started taking this video, Dex was doing a mighty boogy. Didn't catch that but you have to keep your eyes open for the funniest part for me... toward the end of the video Zane picks up a harmonica. If you watch him, he plays it and then taps it on him leg. It is so funny because it is because he sees Paul doing that with the harmonica before he plays it to, I guess, clean it out or something. He is so intent on tapping that thing out! He just goes crazy playing every instrument we have!
It was so fun and a big thanks to Christy for getting the jam session going!
- Dalai Lama
I called to check on the results of the brain scan today and "they found nothing." Ha! I guess this is good news. I just assume that the actual brain was hopefully present. Even if not, as long as they found nothing bad... I will do without the brain. I have been doing fine so far!!!
Tuesday, August 12, 2008
Now I guess it is really LONG overdue for an update on the progress of my chemo and so forth and I have realized that. I almost feel like I am SO overdue that I cannot manage to catch up! But, I am putting my best effort forward to thoroughly bore the hell out of you with my cancer drama! How about that??!!?? Please know that this one is long and not necessary to read. It is here for those who are curious but I REALLY understand that it is not as attractive as those posts with that cute little man of ours!
Since my last update I have had 3 treatments (#3, 4 & 5 – out of 8). They have gone overall, ok. They have definitely gotten a bit tougher as time goes on, just a little bit more to recover from each time. I get really wiped out and so unbearably tired and it lasts for several days to the point that I start feeling guilty like I am being so damn lazy or something!
Anyway, the treatments unfortunately do not come without their drama. So let’s start with #3! I went in for that treatment on July 10th. I went in very ready for a couple hours of cruisin’ magazines, reading my book and eating some yummy lunch I picked up on the way. Well, as Barbara (my WONDERFUL nurse) started with my blood work, I just happened to mention that my port kind of hurt when she pushed some heparin through. It was almost like a pinch. Well, this started all sorts of fun stuff for me! I was immediately sent to the hospital for a dye study to be done on my port. Barbara wanted to make sure that nothing was wrong or off with my port because if she then did the chemo, those drugs are so strong that if my port had a leak somewhere along the way… as she put it… “they could burn your boob off girl!”
Well, this was fun let me tell you! Normally this process would be nothing much for the normal person. BUT we all know that is not quite the case with me! Of course the dye that they use is the same stuff that they use for the CT Scans. This is the stuff that I am allergic to and have to be pretreated with steroids and benedryl. I had to be checked in to the hospital for the procedure in the same place that I had my port put in (which if you remember was quite a nightmare for me so the place freaks me out!). Full on with getting changed into a hospital gown and all (thinking to myself… “how the hell did I get here? Why did I open my fat mouth?”). Then the doc came in to explain the procedure as the nurse was injecting me with all the pretreatments. As the doc is talking to me I realize that I have no idea what he is saying and that all of the sudden the room is seaming very strange and off and that I feel really weird AND my heart is beating so hard and fast that I thought it might just leap out of my chest onto the floor! I kindly interrupt the doctor (who definitely had better things to be doing, it seemed) and then told the nurse how I was feeling. They immediately put me on a heart monitor and realized that my heart rate was up to 158! This was me on steroids! I hate steroids! My body just goes so fast on those things and this was shot directly into my system. It hit me like speed! It ended up taking about 30 minutes for my heart rate to get down to 100bpm which they called my resting HT for the day. Really, normally on steroids, it probably is.
After things settled down a bit they were able to wheel me in and do the dye study which came back perfect! Thank goodness! All was well, but let me tell you… I never came down from those steroids until late that night! After the hospital was through with me they had me WALK back to my doctor’s office because I was so amped up that they did not want me to drive. This is only a block so it really was not that bad but I was pretty disoriented and it is bloody hot here at this time of year!
I returned to my doctor’s office and Barbara took one look at me and said, “Boy girl! You are juiced up!” I replied with a, “You have no idea! That was crazy!” and then proceeded to get my dose of chemo drugs that I came for in the first place…
My poor family later had to deal with me chatting away about everything at high volume, and THEN probably telling them AGAIN about everything. I know because I heard my Mom and Paul in the kitchen (my senses were on super power!) saying, “Wow, she is still really feeling those steroids.” “Yeah, no kidding. She is talking so loud.” I just had to laugh and apologize but you know Pete, (who was my captive audience at that point… poor guy) just listened so politely. I think he knew I just needed to get it out of my system!
And on to treatment #4… July 24th
I had the huge delight of having Paul accompany me to this one. I have learned that I don’t really need anyone to help me get there or home but it sure is nice to have company when I am there. I just never know what new twists may arise! Previous to going in for this treatment I had my pulmonary function tests re-done. I really thought I had nothing to worry about and that I aced that one and wasn’t even thinking about it. BUT that was not the case, unfortunately. For a little background, one of the drugs in my ABVD treatment is called Bleomycin (the B in the ABVD). This drug is the reason that I get pulmonary tests done. It is known to cause stress and long term effects on your lungs. They monitor this because if it does cause any negative effects on your lungs and they don’t catch it early, it can harm them to, from what I understand, unfixable points. Well, my pulmonary functions decreased… my lungs have hardened slightly because of the drug and it is causing me to take in less oxygen.
So, as the end result, I have been pulled off of that drug… for now. The following next two treatments will be without the Bleomycin. They will re-check my pulmonary functions again and then determine if my lungs could handle the drug for the last two treatments.
This of course was scary, confusing, and needless to say, discouraging for both Paul and I as we sat there and silently asked ourselves the same question. “What does this mean for the effectiveness of my treatments and the end result?” Well, Dr. Morris says that overall it does bring my percentages down, like any change in my treatment would. He told me that because of my cancer, staging and so forth my percentage started at about 75% (that is the chance of a full recovery). This now would drop it anywhere from 1% -10%. But really this number is a guess. No studies have been done to really know what this does to my healing process. We will only see in the future. I only wish that my lungs would have been able to handle this one.
And on we go…
And my most recent treatment (#5) was done on August 7th, last Thursday. This one went smoothly and came with good news!!! Paul was able to come with me again to this treatment. It will be the last one he can come to because he is back to school now! Boo hoo! It has been SO nice to have him around during this summer.
So, in between chemo #4 & 5 I had my CT Scan redone. Yes, with all pretreatments and all. This was an at-home pretreatment where I had to start dosing myself with steroids 19 hours before the scan. Needless to say, I didn’t sleep that night but the scan went well and I only had a slight reaction to the injection that night (my face and neck got red and itchy but it didn’t go any further!). At the doctor visit before my chemo, Dr. Morris came in and said, “Your CT Scans look GREAT! And I don’t mean good, they look GREAT!” This was magical news for both Paul and I of course (and the Doc too!) but really what a relief. No matter how much you try and convince yourself that everything is going to be alright, after going through so much lately, it is hard to keep your positive brain powered “on.”
He told us that the mass in my chest is completely gone and that there is a small mass in my neck still but it is small. On to the chemo we went (the second one without the Bleomycin) and to Mimi & Papa’s we go for dinner and a celebratory toast!
Oh but wait!!! Of course we didn’t get off that easy! That night both of my arms went all tingly! It was crazy! Also, the bottoms of my feet swelled up so much that my toes would not touch the floor! I was all off balance and feeling just down-right crapy. But, hell, I just had chemo! I just had some majorly toxic chemicals pumped through my whole body! I felt lucky my arms didn’t fall completely off! Well, I went to bed thinking that if it got worse I would get up and make a call. But it was things I could handle and I was tired, so off to bed. The next morning, it was all gone. Well, the swelling in my feet was much better but still there, but the rest was fine. I was going to move on with my day. BUT Paul insisted that I call Dr. Morris’s office and tell them about the evening before. Well, to my surprise they had me come in right away and get my blood work done. Arghh! Just what I wanted to do is drag myself BACK in there! But, it was the right thing to do. That is what I was told over and over.
The blood work came back fine thank goodness. I have to say that I was deep down thoroughly terrified. I mean, what if my body was getting to the point that it could not handle the chemo anymore? What would that mean? That cannot happen. But, it happens to people. But it did not happen to me. A lot of what was happening to me is a result of the “V” of the ABVD treatment I am getting. The Vinblastine can cause problems with your nervous system which can cause tingling, numbness, imbalance, swelling… yada yada yada. And so it is. Of course it is. I can’t get away that easy!
But the other side effect I have been dealing with is a mind clarity issue. I am so foggy and cannot think like I used to. I get confused and have to read things several times and flip things around. I really just thought of all of this as a side effect of chemo and your body processing so many toxins. But, Dr. Morris thought this was the most perplexing symptom I am having and ordered an MRI on my brain. That just about caused me to have a heart attack in his office. My experience with an MRI was not a really positive one. I really had a hard time handling the whole thing and the thought of getting back into a machine like that made me start to sweat through my clothes! I then proceeded to tell him how awful they are. He then proceeded to tell me that it really isn’t that bad which I responded with directly asking him for a prescription for valium.
Now, I have to take a moment and toot my horn and pat myself on the back a bit. I have been a damn brave woman! I have gone through so many medical tests, scans, waiting to hear news, chemos, and injections, being brave, being brave, being brave. I still am brave. All the fricken’ time! This time I needed a little help. And I asked for it. I don’t always do that. I always feel like I should just be able to get through it. But I went today for the MRI with three valium in my system and my supportive and wonderful husband in tow. He held my foot the whole time. They put head phones on me which played a sampling of some Phil Collins, Def Leppard and Abba over the pounding sound of the machine… WHAT!!??!! I did some serious yogic breathing and got through that f*** MRI! I guess everyone has their thing…
We will hear in a couple of days what the results are of the MRI. I am guessing that my brain is still there and all is well.
I continue to get my Neupogen shots after every chemo treatment but now I only get them for the three days after chemo. Paul is a champ at giving the shots. Zane is very interested in the shots too and actually asks for one too! We have to pretend to give him one after Mommy gets hers. We use his medicine dropper to fake a shot for Zane. THEN he turns around and asks for one in the other arm! Poor kid. He will be so shocked that time he actually gets stuck with one of those things!
Hopefully I will not wait this long again for an update to get to you. Then it will not be so much for you to read. I certainly do not expect you to read all of this. I just know that many folks ask and wonder. They wonder what happened to the updates either from me or my Mom. Things just get so darn busy and then when I am down, I am down. And then, sometimes, I would rather talk and post about Zane because he is so much more fun than all of this.
Wednesday, August 06, 2008
The other night we headed up to the DQ down the street on the bikes after dinner. Zane really enjoyed his strawberry ice cream (or as he calls it... "ceem")... AND Daddy's chocolate AND Mommy's cookies and cream!! He is just so cute sitting there eating his ice cream all by himself!
Zane watching and "helping" Dylan eat her dinner. The video is a little long but we just got such a kick out of it. AND what a DOG!!! Dylan is so good with him and we have always made a point of making sure Dylan doesn't react when someone messes with her food. Well, that has really paid off for us! She just is not bothered by him.