Tuesday, April 22, 2008

Well, I don't have much to report. Yesterday morning, I couldn't get a treatment done because there was some sort of blockage in my picc line. Since Dr. Lodi wants me to get a port anyway, they decided to just expedite that. So, no treatments until the port is in. It may get done tomorrow, we are just waiting on insurance approval. I am scared to death. I won't get put under; they just use pain meds and sedation, but it is still a little surgery. ack!! The nice part is that once I am over the soreness, etc. there is no maintenance for me. I can shower, swim, etc. With the picc line, it has been a pain -- I have to use the press and seal plastic wrap and keep the picc line dry and clean. The port will be under the skin. It will just hurt a little to access it every day -- just like a little shot. That has been the nice part of the picc line. I guess it will all be worth it. I would love love LOVE to get in the pool (when it is a smidge warmer) and just float -- taking that gravity off my leg. The tumor is soooo heavy to carry around!

So, hopefully, the next entry will have good news: back to treatments!

The kids are doing great! Their school is going well and they are already swimming when they can. What a blessing to be by cousins!

Sunday, April 20, 2008

Well, here are a couple of pictures from my birthday. What a day! I felt spoiled rotten all day long! Mom and Karson had made some flax seed crackers for me to take into the center to share with all the staff and my other patient friends. Just like bringing cupcakes to a class at school. :)
Dr. Lodi and I sat down and talked again on Friday. We went over the results of a GI panel and a hormone test I had had done in Austin and just got the results for. So now I am taking progesterone, testosterone, and DHEA on top of other things. We also went over the results of the PET scan. Dr. Lodi said it is as good as we can expect. Other than what we already know (the leg - duh- the shoulder, and the small spot in the back, there were small "spots" that showed up on one kidney, my liver and a spot in my abdomen. He said that they were small and couldn't be diagnosed specifically. He said that it could be places of inflammation, it could be the beginnings of something that we are catching early, it could be something that was there that is going away after 2 weeks of treatment -- basically, he said they were something I didn't need to worry about right now. AND, nothing showed up in the right breast -- so the little pebble that I had found that is pretty much gone, he said was nothing. Yay. Anyway, I was getting pretty teary when he told me about the "spots". He told me that they weren't worth losing sleep over, this is our starting point and we will continue to go forward. So, the good news is that there is nothing in my lungs, my brain, my bones, etc. And, Dr. Lodi was very very happy about that. ME TOO! I have to get another PET scan in 90 days and we'll see where we are then...
So, here is more good news: the tumor in my shoulder area is definitely smaller, softer and moves around a lot more. And the spot on my back is smaller and way flatter. So that is exciting. Now, lets get the leg in on the action. I am so impatient about that!!!!!!
Friday night, we had a fun girls' night with sisters and friends. Karson, Berta, Sarah, Mom, Brendl, Carla, and Polly all came over and we did each others feet and toes. It is so nice to have sassy toe nails again -- even though I can't wear sassy sandals yet to show them off. Hopefully it won't be long.
Thanks to everyone for their support and love. I am going to lick this and get my life back! I am going to be one of those miracle stories. I already am. :)

Wednesday, April 16, 2008

Today I went for a PET scan. Ugh! All I can say is that I am glad it wasn't an MRI; this was bad enough. But it is over. I don't know if I really want the results if they aren't good. It won't change what I am doing. If they just show what I already know -- that is good. I am going to try to be tough. Dr. Lodi is in Korea this week and won't be in the office until Friday. Maybe I will get the results then.

After my treatment at the center, I got home to boxes of presents. Wow!!!!! I was so surprised and touched, I just sat there and bawled! My kids said I have to wait until my birthday to open them, so I don't know what any are yet. But it looks like some friends in Austin had a party for me and sent it here. I am so touched! There is more to look forward to on my birthday than getting chemo and having a colonic! :)

We are sad that Rick hurt his ankle playing volleyball and hope that it isn't broken. Golly, he goes to get exercise and is having a great time and BAM! So my prayers are with him tonight and I wish I could be there. I am grateful for all the people looking out for him!

Our family has just been so supported and taken care of -- I am sooooo grateful for friends, family, and the Lord.

Tuesday, April 15, 2008

Today was the easiest IPT (chemo) day so far in the fact that it took the least time. I still felt pretty cruddy when I got home, but things went smoother at the center. After having another "moment" yesterday where I needed a little reviving, they are watching me like hawks. Yesterday my blood pressure went down to 76/32 before I said anything about not feeling very good. They weren't happy with me. I just thought I was feeling a little nauseous and clammy. I didn't know.... I know a lot of it has to do with me already having low blood pressure as a rule and then doing a juice fast on top of that tends to give people low blood pressure. So, I have to be careful. But I am continuing the juice fast -- after Thursday (which is my 14 day mark), I will take it a day or two at a time. I am not committing to a juice fast for months. But, I have someone making my juice for me and soooooo much help with Caleb and Emma, that I need to see this through.

Some people have asked what is in my green juice. Here is the daily recipe:
dandelion greens
lemon (to get rid of the bitter taste from the greens)
green apple (to sweeten it up a little -- green apples are very low in sugar so I can include them and Dr. Lodi says that if the juice doesn't taste good, what is the point; you're not going to want to drink it)

I drink about 3 qts of that each day. That is my food. I am pretty done at this point with not chewing, but on Thursday for my birthday, I might splurge with some homemade flax seed crackers that Mom and Karson made to take to the center (you know, like how kids bring cupcakes on their birthday -- I am bringing flax seed crackers to all my little friends and nurses)

On IPT days, right after they adminster the chemo and the other drugs, I get to have my sugar splurge to get my blood sugar back up quickly. On the juice fast, that means more juice. But this juice is AMAZING! My Mom has mandarin orange trees in her back yard and she peels the oranges and drops the sections into the juicer and I get this thick, beautiful orange juice that is the sweetest thing you have ever tasted! 2 qts of it every Tues and Thurs. When I am done with the juice fast, I will get to eat a banana or orange or watermelon or some high sugar fruit. Then a salad with olive oil on it. Apparently, olive oil can be huge in not letting your blood sugar fall. So, high sugar fruit to bring it back up and then olive oil to keep it there.

So there is a little info on my eating. Sorry if it is boring. I thought it would be great to get it down.

One last note -- GO ALI for winning Biggest Loser! Finally a girl! And isn't she darling!!!!

Sunday, April 13, 2008

There isn't much to report today. I just thought I would put up some pictures that we took this weekend. Some of the family and one of the kids on their hike. For those of you who don't know, the 2 cute boys in the front of the picture from the hike are Kaden and Kohl Knopp, two cousins who live here in Mesa. This weekend has been full of cousin fun -- which we are so grateful for. The kids are making great relationships and memories to last a long time.
I haven't been in much pain today -- I have just been dealing with a lot of swelling. We'll get it under control....
Today in Church some women sang "This is the Christ" by James E. Faust. I have always loved that song. Today, as I listened to their beautiful voices I was touched by the line, "How many drops of blood were shed for me?" I am so grateful for the Savior, for His Atonement, His great love and care for each of us. I know we each must come to the Savior on our own -- He will not force us -- and the usually what brings us there is being humbled. There are moments when suffering is so hard, but I am not as Job yet (not even a comparison). If this is what the Savior wants me to go through to be the person He wants me to be, I will try to do it more cheerfully and with less complaining. I have so much to be thankful for! I have many great examples all around me of people who have smiled through trials. My goal is to be more like them. Being here with brothers and sisters and friends has given me an opportunity to see what good people I have in my life. My brothers and sisters and their spouses here are so brave and so selfless. I am very grateful for them and their support of our little family while we are here! They have all sacrificed and are sacrificing a lot for us. I am growing to admire them more every day. I am so lucky to have the family I have. Parents, siblings, cousins, nieces, nephews......... the list goes on.
I need to go to sleep. It is WAY too late. I was falling asleep trying to download pictures 2 hours ago. Now, for some reason, I am wide wide awake.

Friday, April 11, 2008

Well, I got one picture today. The red in the tube is my blood -- is that cool? Yes, no. I know it is a little gross. One of the treatments is taking out 200cc of blood, mixing a bunch of stuff with it, and putting it back into my body. That was one of the treatments today. Definitely the easiest of the day. Tracey is one of my favorite nurses. She is really great. She is kind of like a mother hen and really watches over me. Later today, after a different procedure I had a "moment". I got really loopy and dizzy and didn't realize how 'off'' I was until I got up to walk to the bathroom. One of the nurses basically caught me as I was falling across the room. Then Tracey and Michelle (the other nurse) started to hustle. They monitored me and didn't leave my side for about 30 minutes. They had Dr. Lodi come in and then he kept checking on me. I just wanted to sleep, but, since one of my issues apparently was my blood sugar, they wouldn't let me sleep at first. Even after I was doing better, I got checked very carefully the rest of the afternoon. It is nice to know they are so careful. I finally did get a good nap, though, while my IV finished.

Rick got here tired and we were all disappointed about that. In other words, he wasn't much fun today. He is paying for it by having me put it here. :) He is awake enough now to be playing xBox with Caleb, which makes Caleb happy, so that is good. Tomorrow he is taking the kids hiking, swimming, and shopping for birthday presents for cousins and their Mom. So he will get to redeem himself in his kids' eyes. Even tired, though, Rick was helpful by watching Matthew for Spencer and Karson while they got ready for their date. Then he snuggled Emma while she didn't feel good. It really is good just to have him there.

My pain is down again today and the tumor is definitely less swollen. And no IV's until Monday. Hurrah! I have a PET scan scheduled for Wednesday morning and I don't know if I want to know the results of that. I am sure curiosity will win out. I just don't know if I really want to know if it has spread to places I didn't know about. There are enough I DO know about. Signing off until Monday or so......

Thursday, April 10, 2008

I know I am stealing the above picture from an email my sister Sarah sent out, but it is too pertinent to how I feel to not include.

I have felt so many gathered together with me -- angels I can see and some I cannot -- to strengthen me this week. There have been moments when I have pleaded for strength to hang on a little longer. Sometimes I have felt alone as I prayed; then I would get an email from someone or a phone call and I would know that there are others kneeling with me out there . This is so humbling for me!

This has been a tough week in some ways. I started experiencing an immense amount of pain this weekend. Sunday we added a second patch of Fentanyl (I refuse to get any higher than I am now -- 50 mg -- as I don't like thinking about having to come off of them at some point). This did the trick, but between the drugs and not having as much pain for the first time in so long, I could not keep my eyes open for the next 3 days. Through every treatment, every conversation I tried to have --I would just doze off. Finally, Tuesday afternoon, I broke my small fever, sweated and slept and woke feeling more lucid.

I have tried not to be discouraged about not being healed in the 7 days I have been here. I know it sounds silly and impatient, but I just want all these drugs and treatments to knock the tumors out YESTERDAY! But Dr. Lodi is encouraged with the small results we have seen. The anaerobic sores on the tumor on my leg are healing (ever so slowly) and the big tumor is softer. that is ALWAYS a good sign as that means things are breaking down or can be broken down more easily.

Today I had the hardest time yet recovering from the chemo treatment. As I stumbled out to the car when Mom came to get me, I opened the door and there were 3 cute little girls in the backseat all grinning at me. :) Cat, Emma, and Sarah. Sarah started to kick and smile and say, hi. Then she got serious and got to the important stuff: "My gum is all gone." It was just the right thing to see their faces to make me smile. Then tonight, when I had waited way too long to change the Fentanyl patches and was paying oh so dearly for it, Abby came over from Spencer's and Karson's and talked my ear off for about 45 minutes. So fun!

Emma has been my snuggle-bug all day and we both needed that! Caleb won't snuggle but he puts up with my hugs and kisses enough to let me know he is more glad for them than he will admit. It has been a rough time for them in a way, but they are sure having fun being around so many cousins!

I will take pictures of me at the center tomorrow to record what some of this looks like. Maybe I will even get Dr. Lodi to slow down enough for a picture.

Rick is coming tomorrow and we can't wait!

Sunday, April 6, 2008

Here is a great example of what happens when you start your kids young on green juice! I was drinking my juice last night and little Sarah wanted some. I gave her a little glass and she would down it and say, "More, please" everytime.
Isn't she cute? It has been fun to be around so many cousins. It just makes us want to see all the others.

Saturday, April 5, 2008

April 5, 2008

Well, I am still trying to believe that Dr. Lodi and his staff are for real. It all seems too good to be true, so far. Dr. Lodi is extremely intelligent, passionate and caring. He is a Dr. 1st and foremost, but I have never met a doctor who is so accessible to his patients. He is amazing! He explains stuff more than I care about from a medical/science background -- but Mom loves it. :) Yesterday, when I was getting my first IPT (chemo) treatment, he came running in the room and asked the nurse if we had started yet. She said, no, she was about to. He was worried about my hemoglobin counts. They had looked low on the labs from Austin so they pulled more blood the day I got here to check them again. They were even lower. Dr. Lodi didn't want to do the IPT with them low, but he wanted to get going on attacking the cancer, so he and the nurse sat down first and figured out how to do the treatment, adding certain things, and then about an hour after the treatment the nurse was to give me an iron IV and procrit (sp?), which helps the bone marrow create more red blood cells. Then they brought me in today on a Saturday to do another treatment, plus to check my blood again and give me more iron and procrit. I felt bad that someone was having to come in on a Saturday morning and Dr. Lodi said, "Hey, healing is not a 5 day a week job. You will find that I am obsessive compulsive about details and all these kind of things. We have something serious to attack here and we will do what it takes."

The IPT treatment was very interesting. As they lowered my blood sugar, they checked my blood every 5 minutes. Then they administered 3 kinds of chemotherapy. There is one kind that will probably make my hair thin, but I shouldn't lose it all (that means I will probably cut my hair off so it isn't quite so obvious -- bye, bye long hair *sigh*). By then, I was feeling pretty loopy. They gave me dextrose to bring back up my blood sugar, then a whole syringe of something that starts with an "f" (I can't remember the name) that is an anti-fungal drug, then a syringe of diflucan for anti-yeast, then a whole IV bag (smallish) with calcium, magnesium, bromain, selenium, potassium, zinc and a few others. About a half hour after the treatment, I got so sleepy I could NOT keep my eyes open, so I dozed on and off for about 30 minutes. Then I got the iron and the procrit and I was still sleepy, but not loopy, just a little wobbly -- thank goodness for my cane because I think I felt like a drunk person would be like.

Dr. Lodi gave me a prescription for Fentanyl in a patch for pain. I am in love with it! I slept from midnight until 5:30 am!!!!! I did wake up a few times in between there just changing position in bed, but not even enough to check the clock. That is the most sleep I have had at one time in at least 18 months -- probably more. Then I slept again until 6:00 and then until 6:30, when I was pretty wide awake, still being a lot on Texas time, still. But I didn't get up even once in that whole time, which is a miracle. I usually have to get up to deal with the pain or just stretch my leg or pace a little. I can't wait to see if every night can be this great. I hope so. Then, by the time Rick comes next weekend, he might see a rested wife! What a treat for him!

General Conference was great today. I am so grateful for the gospel and for the strength I have received from the Savior. I have truly felt the Savior hold me and love me.

I am grateful for all the prayers, thoughts, love and support I have received from so many people. I feel it. It helps and strengthens me. I can be braver and less anxious. I feel more peaceful and I look forward to continuing treatments. I am going to get well!!!!!!!!!

Friday, April 4, 2008

April 4, 2008

Well, we met with Dr. Lodi yesterday for the first time. He is amazing. Very knowledgeable and very thorough in his explanations. A little too thorough for me -- I don't really care about all the medical stuff, but Mom loved it. :) Here is my biggest complaint so far: he is on Hawaii-time, or something. My appointment was for 10:00 and we didn't get back to see him until 10:50. Then the rest of the day kind of followed that idea. He did want to jump in on treatments, though, so I got an IV yesterday with Vitamins, Minerals, etc and then one with Alpha Lipoic Acid. Everyone I met there was very very nice. I didn't see any patients there my age -- most are my parents ages or older. But that is ok, because they are so sweet to me. It was interesting. All these cancer patients in together, all worried about each other and expressing compassion for each other. What an experience in love. And the staff is very nice. There is someone checking on you all the time -- I mean every 5 minutes or so.

Having a picc line DID make such a difference in getting an IV. They pulled blood out first to do some lab work. I didn't even feel it. Then they started the IV, other than feeling cold for a little bit -- I didn't feel it. It did make it take longer, though. So my IV took 2 1/2 hours, where most people's takes between 1 1/2 hours and 2 hours.

But by the time I got back to Mom's house, I was a wreck! My leg was swollen worse than I have ever seen it. And the PAIN!!!!!!!!! After sitting, sitting, sitting, I was absolutely a disaster. Spencer and Kyle came over and gave me a blessing and I did feel much better. And I slept soooooooooooooooooooo much better. So this morning, there is a pretty high number on the pain scale, stll, but some of the swelling is down and I feel a lot more lucid.

Today I meet with Dr. Lodi again. Then we start the IPT. So the next time type in here, I will have chemotherapy in ne, agh! BUT, Dr. Lodi HAS treat liposarcomas. He treated a man who had one in his thigh! And it is GONE after working with Dr. Lodi

I hope all goes well today. Hopefully, I will be able to sleep better again tonight.

Thursday, April 3, 2008

April 2, 2008

Well, here it is in the wee hours of April 3, and I am not sleeping. What a surprise! I thought I had tossed and turned and dozed at least 8 hours worth, only to look at the clock finally and see that it had been barely 3 hours! *sigh* Oh well.

But...here I am in Mesa. I survived getting a picc line put in on Tuesday morning (the dressing is driving me crazy, but other than that it is ok). I was getting fed up with having to wait so long to get it put in, but, after being told that I couldn't direct music with it in, I was grateful. I am glad I didn't have to direct the Easter Program with my left arm only.

I need more nerve pain meds. Hopefully today I get some called in and get going on them, again. I forgot how dreadful that nerve stuff was. Wow!

It was great to see brothers and sisters and and kids and new babies today. Emma and Caleb were having so much with their cousins, they could hardly stop and tell me hi when I got here. The scary part of our evening, was Emma having a little asthma attack. Thank goodness for Auntie Sarah! Since cousin Kaden has asthma, Auntie Sarah brought over his breathin machine and the drug that goes in it and gave Emma a breathing treatment. That helped and she went right to sleep, snuggling on Auntie Sarah's lap. Whew! Disaster averted, but we will be watching her like a hawk for a bit.

Well, it is a little after 2am here and I was hoping this would take a lot longer than a couple of minutes.

I already miss Rick -- especially when Emma was having her attack. :)

I am keeping my fingers crossed for my appointment with Dr. Lodi. I will see him in less than 8 hours!