Making Lemonade out of Lemons! In October 2010 when I was a 32 yr old mother of 3 girls, I was diagnosed with Stage IIIB Breast Cancer. My Treatment consisted of Chemotherapy (Taxotere and Cytoxan) then Surgery (Double Mastectomy and Lymph node removal) Radiation and SIEA Reconstruction Surgery, then re-reconstruction, followed by 5 years of Tamoxafin. Then in May 2013 at 35,I was Diagnosed with Stage IV Metastatic Breast Cancer. I will kick this Cancer, with a Smile on my face!!
Welcome! Read Me!
This blog is created to give you a central location to answer any questions you have about my current and upcoming treatments and reactions. It is also created to help me make Lemonade out of the Lemons I have been given, so I will keep this as positive as I can.
I want to introduce my Guest Blogger! His Name Is Flat Stanley! He came to me from Matthew in Colorado! And today he came with me to my Dr appointment and Chemo appointment. He also wanted to get a chance to write a blog with me. So now I am going to turn the computer over to Stanley... (OK, I may help him with some of the typing, but he is in charge.) :)
Hi I Am Flat Stanley and I get to do so many cool things because I can be mailed all over the place! This way I get to visit all sorts of people. Since I have been at this new house, I have met 8 year old Katelynn, 6 year old Emma, 4 year old Dani,the Mom Melanie, and the Dad Alex. It has been fun to play with them! It is great that kids are the same no matter where I go, even in Utah!
Today was so different! I got up early and helped get the girls to school! They take so much more time than boys do! But they sure have a lot of fun! Then after we got done with that I went with the Mom, Melanie to her Doctors office. This was a big day for her because she was meeting a new Doctor and it was a day to possibly talk about new options. She learned a lot of good information there were a lot of words that she had to explain to me. Like Chemotherapy! I found out that this is a super Medicine that goes into her body to kill the Cancer that is trying to hurt her. Thank goodness for Doctors and Chemotherapy's to help her fight this Cancer, it has Kept the Cancer from hurting her too much for FOUR YEARS!!! That is AWESOME!!! And there is no sign of that changing. The Doctor pointed out sooooo many different treatments and the plan that they started today may actually make her so she doesn't have to come in for Chemo (that is what they call Chemotherapy when they don't want to say the whole word) through the Holidays. It will be a New Hormone treatment if they can decide that it would work first. So until now she was having the Chemo once every 3 weeks, now she will be getting it every week It will be a 1 hour treatment instead of a three hour one. This is nice for her since the side effects will be even less than she has had with the previous dose. So it should really make Quality of life even better!! Melanie was really happy to hear about that! The other thing the Doctor did was give her a couple more options to help her not hurt much anymore. She has been trying them out tonight and they have been working great! So She is even happier. The next part was Really Interesting!! I got to go to Infusion!!! This is a Place that Kids under 12 are not aloud (unless they are also having Chemo, there weren't any of them there today, but Melanie told me that there have been some sometimes in her other office) But they let me come in and check it out so I could write about it! They are super nice there. They showed me everything so I knew what was going on. Melanie has a Port where the Infusion Nurses can give Melanie the medicine. This is what it looks like!
Then they hook the tubes up to a machine. Melanie told me that she calls it Carrie So that she can be a friend when she comes for her Chemo. That is Cool!! This is Carrie! I good to Dance with her. I guess Melanie does that too sometimes! Carrie is Nice! Even though she makes LOUD BEEPS sometimes if there are bubbles in the tubes, or if Melanie runs out of the medicine that Carrie is giving her. That makes sure the nurse knows that she needs some help.
Robin was the assistant up front who sets up Melanie's appointments. She thought I looked great! She LOVED my Uniform! She came back to talk to me a few times about my trip and how great it was that I could come visit. I agree! I think this will be a great trip! I hope that I will keep having so much fun everywhere I go!
It is fun learning about the stuff in the Doctors offices. And it is fun to write about it too! I am excited for my next adventure!
As some of you know, my hair has been coming back in lately. It has been about 9 weeks since I had my last dose of Adriamycin, and 3 weeks since my first dose of my NEW Chemo, Taxol. So I had these Long Luxurious Locks of hair... They are now gone. Over the last few days my hair has started to come out, and those of you who saw me within the last day or so were the last to see those beautiful locks... but here is a peek of what you were missing out on if you didn't.
After dinner tonight I was scratching my head and came down with a "handful" of hair. OK, so I had a bunch of 1 inch strands covering my fingers, but it was very obvious that the days of having hair on my head was pretty much over. So I went into the bathroom and rubbed my head for a bit and ended up with this...
It may not look like much, but when your hair isn't that long this was a pretty good amount of hair that went missing from my head. So after that I looked like this...
My Mini Mullet-->
After the amount of hair I lost, a lot of it went down the back of my shirt, as you may imagine, that is really itchy, so I decided to take a shower and try to get more of it off before bed time so I didn't have to itch all night. I failed to get a picture right after my shower, but just know that there was WAY less hair than even the last picture with my Mullet. So with it looking so sparse I chose to shave the rest off. I am not perfect at shaving my own head, since, well, what woman really is??? But once I was done you can still see somewhat where I still have some hair hanging on, but it is pretty apparent that there isn't much. I expect that it will be pretty well gone in the next few days. So for now, I am looking like this...
I have Chemo on Thursday, so any hair that wasn't killed with the last round will most likely be killed with the next one. I am REALLY hoping that my Leg hair will get that memo this time around, since it stuck around for the last type of Chemo, and I don't think it is fair to have to shave during chemo. LOL
As for a quick update on how I am feeling, this Chemo is really mild on me so far. When I was on the "cousin" of this one (at least that is how I like to think of it) It was also pretty mild at first, and then got just a little worse with each one, but was totally no big deal at all for at least the first 3 treatments, I am basically expecting the same to be true with this one.
I am meeting with a temporary doc when I go in for Chemo this week, and will likely have a more permanent temporary doc after that until December. After that they should have hired a new full time replacement for my doc. As long as I like that new doc I will be staying there, otherwise I may be shopping for a new office again. Hopefully, I like the new one! I don't like shopping for Doctors!
Well, it has come down to it. The Adriamycin has stopped being 100% effective, it is stopping any new growth, but it is not getting it down lower any. My most recent Echocardiogram was clean. So that was good. It was a struggle to get the info that they wanted since my heart happens to be directly below my implant and you can't see through it with the Ultrasound. But, they got just enough from my breast bone to be worth it. :) My last PET Scan said that I have no new spots, and nothing is getting bigger, but the old spots are "hotter" -taking in more sugar, so it has the potential of growth from there. We made the decision that it is time to change things up. All things considered... it is a good result... Even if it means a change up in the Chemo. I just hope it is pretty nice to me.
This time we are going to to Paclitaxel most commonly known as Taxol. It is "cousin"ish to the Taxotere that I took way back at the beginning. Some might say that now I know how it will effect me... BUT it doesn't mean that at all since I was also taking Cytoxan with it and it is just a relative and you know how that goes, not everyone is exactly the same in your family. (No matter how many times you get called your siblings name) LOL
Most common Side Effects are nothing new to me:
Numbness in extremities, mostly fingers and toes
And potentially more, but potentially less.
If it is similar to the first time I go onto any chemo I will usually be fine the first couple rounds before I really start feeling much of an effect, but it is hard to know if the buildup of another Chemo in my system will reduce that time or not.
I am still feeling pretty close to normal physically, I have had a little bit of pain sneak back into my hips and back, but I expect when the new chemo takes affect then it will go back down again. It has been 6 weeks since my last chemo after all. So I basically expect that some. It is not concerning to me. Over the past two weeks I did have some concerning fevers, but no one could find the reason why. They put me on some wide spectrum Antibiotics, and it seemed to catch it, and I am fine now. No Complaints here. Something about feeling better after not feeling great for so long makes your day just feel heavenly! I am loving it, even if I do have to have Chemo today. :)
School is in for my kiddos so that is also making life so much easier! Me and Dani (age 4) are spending our days doing craft projects and playing pretend. The sweetest was last week when I was dealing with my fever and I was trying to get the girls to take their showers and get ready for bed. I had taken some meds to drop my fever and it made me tired. So she noticed that I was sleepy. So she came up to me and grabbed my hand and said, "Mom, come with me." So I followed her and she took me into my bedroom, pulled back my covers, and told me to get some sleep.When Dani tells you what to do, it is best to do it. :) As she walked out the door she turned off the light and told her older sisters that she put me to bed and that they needed to just go and get their showers and get ready for bed. I rested there for about 25 minutes and then I got up and finished getting them to bed. and Dani looked at me sweetly and said, "You needed that, didn't you mom?" She was right! I needed that. I felt so much better after that. I have the best kids on the planet. Sorry about all of you other parents. I won the Jackpot! I am so happy that they are mine. I will only share in small amounts.
Well, That is all for the moment. Benadryl I will try to update in a little while when I know what this one is doing to me. So far I am thinking happy thoughts and planing on it to be fabulous as usual!
I can't believe it has been so long since I have updated.I am sorry... I will try to go back and fill in some blanks at some point, but for now I just want to get the here and now taken care of.
In February, I started to have new pain in my hip... not the Right one I had radiated before the Disney trip, the Left one. We had some x-rays done to make sure I didn't break anything. Thankfully there were no breaks. But there also wasn't enough evidence in that scan to say that it was from worsening Cancer in the area. So we decided to stay the course hoping it wasn't anything to worry about, unfortunately, it never got better, and has only been being a royal pain in my butt... quite literally. In March, my doc and I came to the conclusion that we needed to change our course of action regarding Chemo. Normally, with Metastatic Breast Cancer, the main goal is to keep a good quality of life, since this is not considered curable, the Dr's job is to make it so you are not miserable while they are trying to remove or control any tumor growth. Because of this, they generally don't want to take you out with the "tough" chemo's if they don't have to. Well, when it got to the point that I was not really able to walk without excruciating pain and even sitting or standing were too demanding for me to do daily we had to make a quick decision. We changed our Chemo and decided to start Adriamycin, or as some people so lovingly call it, The Red Devil. This is an "old" Chemo that has been around for a long time, but isn't as widely used because of it's harshness and it's tendencies to cause Heart problems. Since my original Chemo regimen did not include this I was free to start it now. I am SOOOO very grateful for this drug! Within the first treatment I noticed a difference, and within three treatments I was able to walk without my cane, and I could almost walk without a limp. And NOW, I can walk unassisted, I almost wouldn't know that I even had the issue at all if it wasn't such a short time ago.
I was very worried that the Chemo would be something that I wouldn't tolerate very well. Some say it is a "harder" Chemo than I had before, but my Doc just said it was "different" than the other one. I have to agree with that very much. I kept the same Schedule as before, Chemo by infusion every 3 weeks. I was afraid that I would be taken out of commission for a couple of weeks when starting this... Well my firs treatment put me to sleep. I slept for about 5 days, then once I woke up I was fine. I didn't get any nausea, I just slept. the next few were almost the exact same, except the length of time that I slept was shrinking. I still didn't have any Nausea, but I just didn't have any real appetite. I did not want any food in my mouth. Nothing sounded good, and if it sounded ok, it didn't really have enough flavor to make it worth eating, so I just didn't eat much, but I learned that Dr Pepper was something that always tasted good, especially from the Gas Station up the street. So I started going even more religiously to get my soda. Not only did I get some Calories in me, but I also was getting more energy so I didn't have to sleep as much, and could spend more time being mommy. Eventually I did get some nausea, but it was only in the morning. I was baffled by it for a while, but last week it finally clicked that it always happened shortly after taking my morning medicine. None of them said that they should be taken with food, but I learned that if I forced myself to eat something or at least get my Dr Pepper before taking my meds that I wasn't sick in the morning. So Now that is gone too and I just really feel like I have it super lucky with this Chemo, I can totally deal with some tiredness (I am the mother of 3 that has had insomnia for several years, tired is something I can definitely deal with) and a lack of appetite. It helps me not devour my emergency stash of Thin Mints before I have the new order on it's way.
Now I am coming to the end of the usefulness of this Chemo, so I will be getting a new plan. In order to do this there is a lot of testing to go though. In the next few weeks I will have an updated PET Scan, and an Echo cardiogram so that the Docs will know what I need and what I can handle. I will meet with my Doc the first week in August to set up a new plan and then will start said plan the following week. Unfortunately this will be my last dealings with my Doc. Unfortunately, she has reached the end of her Career and is going to retire. I feared this some since she was not a super young Doctor, but she was still young enough that I thought it would be a little bit longer than I have had with her, but it seems that Hospital politics are just not worth it anymore. It is really too bad that we have to change to a new Doc because of Politics, but I can definitely understand her views. I am hoping that the New Doc that replaces her will be an together as she is, and that we can still keep the care the same or better than I am getting at this point. I have been LOVING the location. I LOVE the nurses and other staff there that I really don't want to move from there, but if I hate my doc my hand may be forced. Praying that I will be taken care of in this respect. The timing will be ok though since we will have just set up a complete plan and it will be something that the new doc will just have to be able to follow until we need to make changes again. So in reality once I know what my current Doc and I feel good about it won't really matter who signs the orders, as long as they get done.
Before my current treatment, I was worried that I would not be able to have fun with the kids anymore because it hurt to have them on my lap, and there was no way for me to get down on the floor to help them with crafts, or play a game, and wrestling or tickling was pretty much out of the question. Now I am a brand new Mommy! I love to be able to do all of these things with them. I am actually thinking of reviving my other Blog to post the things that we are up to. Including my Loom fun and other crazy things we are up to. If you would be interested in such things, let me know. I will think more seriously about the addition.
I hope everyone's Summer is going great and that they are keeping busy enough with fun to forget a little about the stress. I know that is what I have been doing... In other words... Don't look at my house... we are having fun, so you will likely be attacked by Looms and Rubber Bands if you walk too far into our house and while Alex keeps us on a cleaning schedule that works really well, cleaning each room at least once per week, we don't always have all of the rooms clean at the same time.
I am updating this on my new Laptop, so my pictures aren't here yet, I will get them updated and make a post with just pictures, this may help me to fill in the gaps a little quicker for the times that I went "missing" here.
So I guess the Million Dollar Question is... What is going on and Where do we go from here? (I feel like we have been here before)
A few weeks ago I started having more serious pains in my right arm and shoulder. It got to a point that it would be increasingly more painful to even push a computer mouse, so I decided I needed to get it checked out. I went in and there weren't a lot of other symptoms other than my pain, so my doc sent me to get an x-ray to make sure I didn't break it, I didn't. So then I was sent in for a PET scan to see if there was a tumor. This time I went up to the Main Huntsman Hospital to get the scan. It was definitely different. Not only did I have the Radioactive sugar going through my Port, but I also drank the radioactive "smoothie" (more like a huge bottle of Milk Of Magnesia blended with fruit flavored Tums) So I was placed in a dark room and told to relax as I was interrupted every 20 minutes to remind me to drink another little bit of the "refreshing" beverage. Apparently the one though my Port shows tumors in the bones, and muscles, and the Drink shows the ones in organs if any.
Once I completed the scan and headed home, I called to see if I could get a copy of the CD so I could continue to have the complete set of my scans. Well, I was pleasantly surprised because when I left I was under the impression that once I ordered it that I would have to once again drive clear back uptown to get it once it was done loading, or wait for that and then for them to put it in the mail for it to be delivered to me. I was very happy when they let me know I could pick it up at the Radiology department in the office next to my Oncologist, 15 minutes away. That was definitely a relief. I had the CD by the following day which was good and bad I suppose. When I looked at it (again, I am NOT trained in reading these things by any means) I noticed that my shoulder area seemed to glow like the other known tumors that I have. So I pretty much decided that is what it was.I don't know about you but when I am left to my own devices I can dream up a lot of Best and Worst Case Scenarios. And, unfortunately, I ended up with nearly a week to do so before I met with the Doc again. This is not a very good thing except I had really started preparing myself for the worst.
That week came and went and it was now time for the visit with my Doc. When the order was sent for the PET scan, She requested that they specifically compare my prior scan from July to this new one so that we could see if anything was getting smaller or not. The person who read the scan apparently missed that particular note and only gave results of the new one and did not review the prior one. This was still enough information that we could get some results, just not 100% of them. Those results were essentially what I had assumed. Yes, the pain in my shoulder is caused by new tumors. I have one in my arm bone connecting to the shoulder as well as one in my shoulder and the one that I have had in my shoulder blade since the beginning is starting to do damage to the bone. Unfortunately, they also found that I still have the tumor in my right Femur, but also now in the Right Hip, Tail Bone and my Left hip. The only one of these currently causing any bone damage is the one in my shoulder blade. This is good news because this is not a Weight Bearing bone so unless I fall flat on my back I should be fine once we get it under some control. Since I do have these additional tumors though she has restricted my weight bearing activities. I should not be picking up things that are more that 20 lbs with my right arm, and I need to "take it easy" so as to not risk any falls that could cause any issues with my hips.
We wanted to find out why it was doing what it was doing. I was on the Hormone inhibitor that should have kept my body from feeding the cancer and causing it to grow. So I had a blood test drawn to see where those levels are. They are low as they should be on the inhibitor. so in other words, it is no longer relying on the estrogen to feed it for it to grow. There is something else feeding it. (we don't know what at this point) So... The inhibitor is not going to work for me. At least for now.
That being said it is back to my favorite Chemo! Whoo Hoo! I started it today. I am only taking the Xeloda Pill in the same dose as I was originally. This is a great plan, if it works, especially since I don't have to spend an hour in the Infusion chair, I can do it all at home. I am being monitored closely to see how it is reacting so that the doc can "tweek" the dosage as needed to ensure that we have the right process. The bright side here is that while last time when I was taking this at least I wasn't getting large amounts of re-occurrence, it was at least slowing the growth. So it should allow us to have a better chance of getting it to a manageable point. For now I simply have to work with a pain management processes until it shrinks to a point that it is no longer pressing against my nerves so much, which is essentially what I understand the pain to be coming from. We will go into Radiation if at any time any of my weight bearing bones start to appear compromised.
The "Glowing" ares (except my brain) are the areas of concern.
At this last appointment I also asked the question that I never really wanted to ask, but because of the growth I wanted to be up-front with what I should be expecting. My Doc calls it the "Elephant in the Room" question... I asked her for a more official Prognosis as to the timeline I should be looking at. She avoided it for a good 5-10 minutes reviewing things in my chart and reviewing the plan that we had discussed, and finally qualified the answer she was going to give me with where the stats come from, as in mostly women over 70 with additional health issues and contributing factors. So my time could likely be higher than the averages that are gained from this group. but the timeline she gave was approximately 2 years. This is a somewhat common timeline that I had seen online and through others experience.With this information she also stated that there are at least 6 additional treatments on the table that we can use, so there are more options to hold off the disease. If we can get it to go into remission then that time will have a likelihood to go up and add years to my life. So, we do have some additional hope. We are not at the end of our options yet, and who knows what new options that we will have within the upcoming years with new treatments and such.
I had told my dear friend Kami about my scan and what I thought it could be when I had gotten my CD back, and being who she is, she went to work. She started things in motion because she wanted to make sure that I would be taken care of if/when I had to be on Chemo again and missing work and pay. With this there has been an ever increasing, and an un-fathoming, outpouring of generosity that I could have never imagined. Additional neighbors and friends jumped in quickly and increased the goal to not only include some financial stability, but to also include the goal to send me and my little family on a wonderful trip to Disneyland. The timing is great as we were intending to try to get there in the next year as well. The girls are finally getting close to the height requirements for many of the rides. Dani still has an inch or two to go for some of them, but Emma and Katelynn are right about there if they are wearing the right shoes. ;) Now things are in motion so we just have to find a time that is going to work. We want to bring Grandparents so they can be included in the joy! With all of this we need to make sure that we can find a time that works for everyone.
Now that I am officially off work on Short Term Disability for the next 6 months I can continue on my quest to keep my kiddos as my central priority This begins with an extreme BANG this weekend. My Sweet neighbor and friend Nancy arranged for us to have tickets to go to the Circus tomorrow. The girls are so excited! They all told me tonight that they were so excited that they weren't sure if they could calm down enough to get to sleep. Thankfully, they did finally crash so I don't have to take sleep deprived children to the Circus tomorrow. :) And now that they are off track we will be spending a great deal of time at the Jump and Bounce. This is something they were excited about but will definitely PALE in comparison to the Circus!
Tomorrow is also a Yard Sale to help increase the fund and help us to continue to make ends meet and care for our wonderful girls. I could not have asked for more. And I am astonished and overwhelmed every day because of the wonderful generosity of those who surround me. "Thank You" just doesn't even seem to come close to the Gratitude that My Family and I have for all who have contributed to the cause in any possible way. I know that Every Prayer that goes up on our behalf is helping me stay emotionally together at least some of the time. I am still consistently increasing the Lemonade at our house for the girls. We are not currently telling them of any time line. They don't need the stress of that worry at this point, but we are preparing them in our way by helping them understand the process and where we go from here and the promise that we as a family will be together FOREVER! There is Nothing that will ever change this! And I want my girls to know this beyond a shadow of any doubt so that it will help them cope with the end result no matter how long I have with them. I do not want them to have ANY question that I love them and will never stop.
My Upcoming Lemonade will definitely include a Photo Diary of the Wonderful memories that we are going to be making. in the Months and hopefully MANY Years to come.