Chemo round 5...starting to hit hard

So I just finished my 5th chemo round. It hit me really hard this time. I started feeling it early on Sunday. In the first few rounds I didn't feel it until Monday. Last round it was Sunday as well, but I felt it much harder this time. Thank goodness for my new(ish) anti-nausea, they are really helping my nausea and not making me nearly as constipated as the old anti-nausea. I was able to skip the doctor's appointment, which was good for us as it's a two hour drive without traffic and it's nice to avoid that every once in a while.

On Tuesday I was feeling so bad, I skipped Bible study, which I normally do on my chemo days. I had an offer from one of the moms at the boys' school to take Ben to the preschool she works at on Tuesdays and I actually took her up on it. And of course Ben got spoiled, loved that he got to bring a backpack and lunch box to school, just like his older brothers. He got along well with all of the children, and even painted a picture of me with the sun!! I think he missed me a little.

 

This picture is right as he was being picked up for school. He looks way to grown up in this and it makes my heart ache knowing that he's going off to kindergarten in August.

On Wednesday, I was still feeling sick and there wasn't an option to send Ben off to school, so he stayed home with me and I was in bed for most of the day. He threw the biggest fit and cried for a while. Since Ben was having such a bad morning, as was I, and I didn't want to get out of bed. I decided to do homeschool in bed with him. He refused to go downstairs to get his work books, so we traced letters on each others backs with him practicing the letter sounds. He loved this. And so did I, it was such a great relaxing time to spend with him. The funniest part was after I drew a letter "B" on his back, asked him what letter it was and he answered correctly, I slapped his back (gently) and said "I got it." After that he drew the letters K and R on my back slapping my back saying "I got it" when I said the correct letter. I then had to explain that the letter "B" and a bee sound the same and that's why I slapped his back. He got it after that. We slowly made out way downstairs around lunch time and after practicing many letters, to make lunch. Then we watched some cartoons and I half slept until it was time to pick up his brothers.

 

I am so thankful that this round is over...my next round will be my 6th and then I'll be half way through this year of chemo!!

I also decided during this round that in a little over a year I will be turning 40...I'm going to try to do 40 things out of my comfort zone before I turn 40. And on my actual 40th birthday I'm going to jump out of an airplane!! I also want to run my first half marathon in November, go on the Price is Right, repel with Over the Edge for Brain Cancer again, along with any fun and crazy things I find at the fair this summer. I've got a little over a year to reach this goal...lets hope I can do it and find 40 things to do!!

The local Newspaper did a story on me and my family!!

I was contacted by a friend, a few months ago, asking if I'd be willing to share my story in the newspaper in a "Cancer through Courage" series that was running. Of course I said yes.

I was interviewed one day, last month, and had a photographer come a couple days later. I was told that the photographer was a "portrait photographer" so I asked him what we should wear for the family photo, matching kids, similar colors, random, or what he thought. He told me to just dress as we normally do. I wasn't going to wear yoga pants and a workout top for the family photo, so I actually got dressed and put makeup on!! The kids wore whatever they wore for school that day. Sean came home from work in his shorts and t-shirt, while Ben, wore what he ALWAYS wears...his Spiderman PJ's. Hey, the photog wanted normal and that is our normal, all but me, lol!!

So the photographer had us all sit in the corner of our couch, Ben and Zach were fighting as usual, so we let Ben hold the dog as he was crying through the first round of shots. Honey calmed Ben down and gave us all a good laugh when she darted out and ran around the room a few times. But I have to say that the funniest moment was when Zach let one rip, yes my son actually farted during the photo shoot. We all laughed and spread out as quickly as possible, luckily he had already taken enough family photos and it was time for my individual photo shoot. I'm not a big fan of having my picture taken my myself, I always feel awkward. And I'm sure you can see that in the photo!!

Anyways here is the online link to the article...

Courage Through Cancer: Brain Tumor Prompts Bucket List

Yesterday the boys and I went to the local grocery store and bought 4 newspapers from the store. The checker said to Josh and Zach, "wow there must be something pretty special in this paper if your getting so many," to which Zach replied happily "we're in it!" The checker asked why we were in it and Josh replied "because my mom has cancer." The look on the poor checkers face...if only we could be in the paper for something better than cancer! Maybe one day...I'll put it on our bucket list!!

Doctor, MRI, Chemo, and camping...oh my!!

A week ago on Wednesday (3/26), Sean and I drove up to Cedar Sinai to have an MRI and to see my oncologist, Dr. Rudnick and his PA.

The MRI came back as we had hoped with no changes, meaning that the "white" stuff on my MRI is most likely scar tissue. If it were remaining tumor it would have shrunk, but it didn't leaving us to believe it is scar tissue, yay!!

With the results of my MRI, it was time to discuss the chemo I've been on. My counts were low for 3 weeks, the reason it was delayed the past two rounds. With that, Dr. Rudnick said that my bonemarrow was not healing in between rounds like we need it to, so he lowered my dose from 350 to 300. We also discussed the different anti-nausea meds that I was taking and I told him that I'd like to try Emend as I had heard it had anti-tumor properties in it (lil bonus), so it was perscribed as well as an anti nausea patch.

I was very happy with my doctors visit. But now with missing the past few chemo dates I had been pushed to start of Friday, which also happened to be the weekend of "family camp" for Indian Guides (a father/son camping bonding weekend through the YMCA). And my boys really wanted mommy to go with them...

So I sucked it up and went, after all I'm trying my best to not let the chemo slow me down and also not let them realize that I am taking it. I want them to look back and realize that I did chemo, it didn't slow me down and that they can do anything they put their minds to in the future.

Camping was fun and exhausting. I must have looked like a zombie all weekend!! I took several naps, but spent time with my boys as well. On Saturday morning, I borrowed a freinds car to go cheer on a tutu run for a friend, that'll be my next blog and I'll try to remember to come back and link it here. The new anti-nausea meds helped...a lot! And I didn't take my chemo on Friday until I went to bed (same with Saturday), so it didn't really hit me until after we left on Sunday, but I actually hallucinated a little over the weekend according to Sean!! I was a little spacey and thought that Faith texted me something about a boy at our house, when in reality she was home with 2 of her girl friends after they worked that evening.

I was able to watch my boys ride the BMX track, zipline, get lost, mine for gold, sit around the campfire, and have a great time!! It was a wonderful weekend with my family and I'm so happy that we were the one family allowed to bring our motorhome as there was no way I'd make it tent camping while on chemo...I'm not that hardcore!! I just want to get the most out of this life and enjoy every bit of my kiddos as I can!!

Zach playing basketball with friends before the sun sets on Friday night!

 Sean joined the boys in basketball, I love how he gets out there and plays with our kids!

 Sean riding around the camp ground with Ben on his handlebars.

 This is how we ate all the meals, so fun being together as a group.

 Josh wandering around camp. There must have been over 500 people there all together!

 Our tribe is the Thunderbirds and they yellow shirts are for our tribe.

 Mining for "gold." One of many activities that I was able to watch and help out with.

 Ben, so proud that he found "gold."

 Sean helping Ben find even more "gold." And, yes, they wear the same clothes all weekend! (GROSS)

 Sean enjoying a moment to himself around the campfire. I loe my hubby more than words can say!

Zach and some friends playing with water balloons and attacking other tribes in their nation!

Missed chemo doses, positives and negatives

Again...my chemo dose was postponed. I was very disappointed, I just want to get this over with as quickly as possible. But my blood counts (platelets to be exact) and that means that my bone marrow is not healing in between rounds of chemo like it's supposed to. And that's bad for me...I guess and the reason why my chemo has been postponed three times now. Once last month and twice this month.

While I'm bummed that my counts were too low for another round of chemo. I did get to enjoy many good times with my family as I wasn't sick/tired/puking/crying/sleeping/in pain from the chemo.

The first weekend I was supposed to be on chemo was a perfect San Diego winter day for us with weather in the 80's and living next to the beach we decided to bring our motor home to the beach and invite family and friends to come down and join us. Which they did and we loved it! It was a great day watching my boys play with friends, climb on the rocks (at the jetty), and surf/boogieboard in the water. The water was too cold for me to get in, but my boys don't seem to mind the cold water!!

Friday (3/14) was "PI" day, so my kiddos and I ate pie, a Julian apple pie to be exact. I did tell them that pi was a math thing that they will learn one day how to use it to measure the circumfrence and area of a circle and hey, a pie is a circle, so it all goes together and we're all about celebrating the little things this year and every year!!

My kiddos were very excited to eat their pie and Ben was excited all day for pie as he's home with me all day and went to the store to help me pick out a pie!!

The second weekend I skipped was a great baseball weekend for Zach and Ben (Josh doesn't play baseball anymore as he doesn't like the idea of kids pitching to him and I honestly don't mind, because our daughter played softball and the games were long, boring, and drawn out when the kids pitched)! My husband (the man always amazes me) coaches both of my boys teams and I have to say is an awesome coach...win or lose the kids have a great time and he points out all of the great things EVERY player did during the game from amazing plays to great hits to good sportsmanship. The kids love the praise from him and always look forward to who will get the game ball each week.

So overall it was a positive thing that my chemo was delayed a few weeks because I was able to spend more time with my family, one of my favorite things in life!! Now to get my body back on track to finish this year of chemo....before Christmas, I hope!!

Delays...never ending...1/4th of the way through

My chemo round scheduled for February 7th, was delayed when Sean told the doctor's office on the Wednesday before that my son had a fever, they pushed my chemo to the following week. So, yes, I started my chemo on Valentines day. Happy Vday for me!! But it was fine as my husband and boys all went camping in a father/son program they belong to called Indian Guides. So I had a nice restful weekend, until they came home on Sunday afternoon!!

Tuesday, in the wee morning hours, my 5year old, Ben, came into my room throwing up. Knowing that my husband had to leave at 4am to drive to Los Angeles to work for 2 days, I took care of him. I think (or I'm hoping) that I caught whatever he had as I threw up for the entire week through Saturday and felt worse than I had ever felt before on the chemo.

No exercise or special diet for me during the week as I was too weak, sick, and tired for anything. But I was happy that this, my 3rd round out of 12....marked me being 1/4th of the way through my chemo!!

So now, I'm looking forward to my 4th round of chemo starting today, March 14th...28 day cycle, makes remembering the dates from February to March very easy! However, I got a call that because of my blood work yesterday, it shows that my counts (platelets to be exact) are low. Now I'm not even sure what platelets are, so I looked it up online and saw that it has nothing to do with my iron count and that it means my blood wont clot and that I can bleed easily. I never knew there was so much to blood...they look at my platelets, white blood cells, and red blood cells.

And for some reason I have been feeling very tired, guess it has to do with a low platelet count, but again, I'm not sure...it just seems fitting that I feel so tired as a result of it.

MRI, Check up and 2nd round of Chemo

Last Wednesday, January 8th I had an MRI and met with my oncologist. It also happened to be my youngest son's birthday and he was going up to Cedar Sinai with my husband and I. I felt bad leaving him for the day with a babysitter or at a friends house as it was his birthday...so I dragged him to the boring hospital to sit around and wait with us all day!!

Before we went up, we allowed Ben to open one present. I actually allowed him to open the one because his brothers went with me to purchase it and each ended up getting one of their own, so I had to have him open it as each day I was facing numerous requests for his brothers to open and play with theirs. Knowing that as soon as Ben opened his, Josh and Zach would be able to open and play with theirs, so this was the case and he opened it and then left for the hospital!

Ben's birthday outfit (he wanted his Spiderman PJs), complete with Spy Goggles

 

One of my best girlfriends from high school lives and works up near the hospital, so we met for lunch. We had to find a place that would do a little birthday cake or ice cream for Ben, so that he got something fun before the boring hospital visit! She said there was a BJ's near her and the hospital, so we met there and after lunch, Ben got a pazookie!! Now, if you don't know what that is....you're missing out!

Excited for his birthday Pazookie

After lunch, which ran late, we rushed off to the hospital. I checked in at 12:40 for a 12:45 MRI...not a good thing as check in is supposed to be 30 minutes before. After checking in a nurse came to me to inform me that my order had not been submitted from the doctor, which the doctor's office does electronically. I called the oncologist's office and was informed that it had been turned in and she was not pleased with the MRI center, almost demanding to speak with someone, but I had called her from my cell and wasn't going to go around to find someone for her to talk to!! Then we were informed that the doctor's office had made a mistake and never electronically signed the order, so it had to be submitted again...extra long wait, but at this point it didn't matter that I was late and the office manager from my oncologist's office met us in the waiting room after my MRI and personally apologized and walked us up to the Oncologist's office and made sure that we got in right away with the doctor and we did...it was nice to have a little royal treatment as we were personally waited on, walked to the office and given bottled water!

Ready for my MRI

 

One reason I like getting my MRIs done up at Cedar Sinai is that I see the oncologist right after my MRI and don't have to wait on my results as that wait time causes so much anxiety.

As soon as the PA came in we were ushered into the viewing room to the doctor who was looking at my images. I've seen MRIs so many times now, but I still can't read them...I just know that white is usually not good. And I did see a little white chunk, but Dr. Rudnick thinks it's just scar tissue and if it is residual tumor, the Chemo I'm taking will shrink it, so if it stays the same it's scar tissue and not problem...if it shrinks, it's residual tumor and it's good that it shrinks...so he sees no issues with it whatever it is. But I still home it's just scar tissue as I don't want any tumor left in my brain that is visible on the MRI. I know there will always be tumor in there, unfortunately.

So the results of my MRI were good and the doctor said it was healing nicely and that the swelling had gone down and that the cavity filled with air (and a reason for my husband to call me an "air head") had filled in with brain fluid, so everything looked great!!

All of my blood work from the chemo came back good and I was ready for a higher dose of chemo (this will be the only time they raise it), so now I'm at 350mgs of Temador from here on out.

I started the Temador on the following Friday. I could definitely tell that the dose was higher. I felt tired from the start of it this time. And to notice on day one was definitely tough. My mom came down on Sunday as it was the day we were having Ben's birthday party...yes, I scheduled his party during the middle of my chemo...life goes on...and his birthday party was a hit. He was a very happy boy!!

The birthday boy, celebrating his birthday and finally being home from the long day at the hospital.

 

I really don't want my children to realize that I am on chemo now or to see a difference in me. I want them to look back and say wow, I never knew my mom did chemo...if she can do that without me noticing...then I can do anything. I would love for it to make them stronger and for them to realize they can do anything they put their minds to.

So with my mom around, I was able to nap a little more in the afternoon and have her pick my boys up from school. Mom ended up getting sick and leaving on Wednesday (one of my toughest days), but that was fine as I have my daughter and husband around to help me out. I also really didn't want to catch whatever she was coming down with so I was happy to have her leave!!

I got through the chemo just fine, but the nausea was way more intense and I found myself taking more anti-nausea meds that I did the time before. And the anti-nausea meds give me all sorts of other problems from constipation to headaches, so I have pills to help with those, ugh! I hate talking pills for the side effects of the pills that are supposed to help with the side effects, lol...it's a vicious cycle.

 

Mung Bean Drink...Cleanse/Detox

One of the mom's at my boys' school was diagnosed with breast cancer and went through a round of chemo earlier in the school year. She is Asian and uses family recipes to help her detox her body from chemo. I did this with juice, but waited about 5 days after my 5 days on chemo, so that the chemo would be in my body and have time to work, before I flushed it all out.

This mom made me two different "bean drinks," one of which I have made since she made the first batch for me. And it is Mung bean drink. I bought Mung beans at out local organic health food store, Jimbos. They were located in the bulk food section with many other beans and nuts, etc. Fairly cheap, only a couple bucks a pound.

 

In doing a little online research, I learned that mung beans are very popular in China. They make everything from soup, to desserts, to wine with them! There are also several health benefits listed online from them ranging from cooling the body during heatstroke, helping with acne, and ridding the body of toxins.

Here is the recipe for Mung Bean Drink...

Soak 1 1/2 cup mung bean with water for 2 to 3 hours;

I only did one cup, because I couldn't find my large pot

drain the water out and place soaked beans in a 8 qt soup pot; add about 1
1/2 gallon of filtered water and bring it to broiling point and simmer for
another hour or 1 1/2 hr; pour the liquid into jugs and chill.

 

 

I drank it hot, as it's fairly cool out this winter, I drank it out of a coffee cup (I don't drink coffee) and enjoyed the warmth of the drink. It didn't have much flavor as it's basically a broth from the beans.

 

I also learned (maybe I'm dumb for not already knowing) that beans are soaked so that the bad taste of the outer layer of beans is removed while being soaked and not cooked into the "broth" or the bean itself.

 

With it being the new year and all, I figured this is not a bad way to help me lose the few extra pounds I put on from the steroids during and after my surgery as well as with all the holiday food. I've been doing this for a few weeks now and really enjoy the cup of mung bean drink while I drink it. The beans I can eat or toss, depending on what mood I'm in. They're not bad, but I'm not cooking them like a soup with onion, carrots, etc to add flavor, so the beans are plain.

 

Please consult a doctor before using any of my natural cleanses/detoxes. I have done my research and consult with my oncologist on what I can and can't do.