I am sorry I haven't posted this update sooner. I got the results from my brain MRI, and they are good! My brain tumor has continued to shrink, and there were no new tumors. Needless to say, we are all thrilled.
I have enjoyed this last week during my off week of chemo. We had a wonderful Easter, and a fun spring break.
I fully intend on doing a longer entry soon, and plan on adding pictures from our St. Maarten trip, Easter, and activities we have done lately. It is just hard for me to type right now because I have tumor pressing on the nerve of my right arm, making my arm and hand numb and tingling, and my fingers aren't working right. Very frustrating. It is a priority to get this blog and picture page updated this week, so check back!
I survived another week of chemo pills, along with Herceptin last week. I finished my week of pills yesterday. I am SO glad. My oncologist increased my daily dose from 3000mg to 3500mg, in hope of slowing the cancer down. It takes a couple of days for my stomach to recover. I am still really tired. No matter how much I sleep, I am still tired.
I am enjoying the warmer days. I even went outside and blew bubbles with Ammon. I sat and soaked up the sun while Ammon giggled and made a big soapy mess.
I have a brain MRI tomorrow. It hardly feels like it has been 3 months since my last one, but it has. I really hate tests. They make me feel so anxious, plus the actual test is not very pleasant. I am praying for good results. I haven't had any new or unusual headaches or symptoms, so I am hopeful that my brain tumor is still shrinking, and that there are no new brain tumors. Wish me luck!
 I got myself a new set of wheels last Friday Jan. 30th. A couple of months ago my doctor wrote me a prescription for a wheelchair. I never go to the mall, or Walmart or anywhere because it is too painful to walk very far, and it tires me out too much. My girls have been wanting to get their ears pierced at the mall, so I finally broke down and had Dan go pick up a wheelchair for me.
It was wonderful to be able to go to the mall, and we also went to Costco. This was my very first visit to Costco. It is a different world appearing "handicapped". Some people are so wonderfully sweet, thoughtful, and accommodating. Then there are the people who are impatient and treat you like you are ruining their life by being in their way. I don't think we will take all of the kids with us to Costco again. It was too hard to manage all of the kids, plus a cart, plus a wheelchair.
 This isn't a very good picture of me in the wheelchair. I was still got tired out, and I think it shows. The current chemo I am on doesn't cause complete hair loss, so I have some nice hair growing in! Yeah!!! As you can see in the picture, my hair is really short, but at least it covers my scalp now. And my head isn't nearly as cold! The kids all took turns pushing me in the wheelchair. The boys even had a turn sitting in it.. Aren't they adorable!
The mall was great, and Bekah and Abby were so happy to have their mom go shopping with them. They are so cute with their new pierced ears! Even Caleb was thrilled to get a pretzel and Dan bought him a Jazz hat and T-shirt.
Okay, now time for not so fun stuff.
An update on my doctors appointment on Tuesday.
We found out exactly nothing. They are unsure of what is going on with my lung. The P.A. suggested that maybe it was scar tissue from pneumonia. WHAT??? I haven't had pneumonia in the last 20 years let alone the last couple of months. The densities in my lung did show uptake on the scan, which means that they are actively growing. I asked if maybe we should biopsy, and the PA said it was too risky, and it didn't matter whether it was cancer or not, and it wouldn't change the treatment. It may not matter to them, but it matters to me!! I want to know what the cancer is doing to my body. If there is new growth, I would rather change chemos right away, before it is too late and the cancer grows too much.
The plan is to do more blood work in a couple of weeks, to give us a better idea if the cancer is still growing despite treatment.
We are all really frustrated at the lack of answers and the indifference shown. My last blood work results weren't even in my chart, so when I asked about the results they didn't even know what was going on. The P.A. wrote my pain medicine prescription for the wrong medicine too. I really like my oncologist, but don't like it when I don't get to see him, and just see the P.A. Their office is too busy, and too many times results are lost, and they don't remember when I am due for tests, scans etc. I have to keep track of when I am due for them and ask to be scheduled, otherwise nothing would get done. They would just keep pumping me full of $4,000 a pop chemo and making big bucks, while offering inadequate caretaking of the patient . Can you tell I am a little fed up?
It is hard enough having cancer, and it makes it more difficult when you have to be your own advocate. I feel like they are so indifferent, when this is life and death to me! How can it not matter what the scans say???? I feel like they just assume I am a gonner and it doesn't matter what we do, my death is inevitable. So who cares about progression, or new tumors... Just keep me on the most expensive chemo's for as long as possible so they can keep raking in the cash. I know that isn't probably isn't so, but I feel like that sometimes. I just wish the chemo would shrink tumors, and the cancer would just go away....
 I am just so grateful for all of you who care so much about me. My dear friends and family are always so inspired, and know when I need a little extra TLC. I have received so many nice visits, thoughtful cards, and beautiful flowers this last week while I have been struggling. I am so grateful for all of the tender mercies shown to me and my family. Please know that you are heaven sent! Thank you for taking such good care of me! I know I say this all the time, but, I could not endure this without all of the love and support we receive.
Dan pulled some strings on Friday and got Dr. H's secretary Meridan to fax him a copy of my scan results. Preliminary test results show that my hottest spot on my left hip is not as active, but all of the other bone mets are growing hotter than they were before. Not a whole lot hotter, but not shrinking and going away either. No mention was made of my liver, whether it was okay or not. Very frustrating! I guess I can assume it is okay otherwise the radiologist would have said something. The most concerning thing of the report was that my right lung shows uptake with mild patchy density in my right lung with mild airspace disease. I don't know what that means, whether this is cancer or not. So, I went to the University of Google to try to figure out it out, but I'm still not sure. I guess that is what the oncologist is for. I will have to wait for my next appointment and see what he thinks.
I was really hoping for some concrete evidence that this chemo is either working or not working. It seems like it may be slowing the cancer down some, but not shrinking it. I was hoping to see shrinking tumors, because that would make it easier to continue chemo. Or at least maybe see a lot of new growth so we know that this chemo isn't working, and then I could quit that one and maybe try something different. So all in all, no real answers. Not really bad news, but not good news either. I guess we will just wait and see, continue doing monthly tumor marker tests to track tumor growth, and pray for good results.
I really think one of the hardest things about cancer treatments is the not knowing. Not knowing which chemo to try, not knowing if it is working, not knowing how long I will survive, not knowing whether I am wasting the time I have left by being sick from chemo. ARGGHHHH!!!! It just makes me want to scream!!!!
I want definite answers. Yes or no. Black or white. Not these never ending shades of grey!! I think it just always comes back to faith. Faith that Heavenly Father knows what is best, He can see the big picture, and He knows the end from the beginning. I just wish I could know that also.
Just a quick message to all of my blog readers. I would like to thank you for all of your kind words of love and support. We read each and every message that you post, and even though it is not possible to reply to every comment, please know that we gather strength and take great comfort from you. I know that all the prayers you offer in my behalf are heard, and you will never know how much they help me and my family.
Tonight as I am so worried for my Pet-CT scan, Dan was reading me your comments as I rest. I have felt so much peace and comfort. As you are prompted to share your thoughts and experiences, please know that your words are truly inspired, and are usually just what I need to help me. So as many of you say that I inspire you, I want you to know that all of you inspire me, you help my faith, and help me find the strength to carry on. To those of you who have also shared your personal experiences to help me, I thank you so much. You will never know the comfort that your words and messages bring to both me and Dan.
I know that Heavenly Father answers our prayers, as well as some of our secret worries and longings through other people, and I don't doubt for a moment that He works through all of you to share stories that answer questions or worries that I have. I thank you all from the bottom of my heart. Thank you for sharing our journey with us. We could never make it without you. Thank you, and God bless you all!!!!!
I received the results of my PET-CT scan on Tuesday when I went for chemo. We got to the hospital at 11:00a.m. After I signed in I went to medical records at the hospital to get a copy of the PET-CT scan report so I could read through it and be prepared with knowledge of what is going on when I saw the doctor. I was not surprised with the results of the scan, but I was disappointed.
I have widespread new tumor growth, and the tumors that were stable are now metaboically active. I have new tumors growing around my right lung, my right shoulder and humerus, and all over the right chest wall. I had hope that the swelling in my arm was from something other than cancer, and I had tried to think of all the reasons why I could have swelling and pain, but it is in fact cancer. I have cancer in my lymph nodes in the jaw, armpit, collar bone and neck. I have cancer growing in my right hip and pelvis, as well as the hottest most acitve cancer is in my left hip. I have been on strong pain meds and I am still in so much pain! The cancer is growing in my thoracic and lumbar spine. Suffice it to say, the chemo (Taxol ) is not working.
I requested to see the Doctor, not the PA, so we waited an hour and forty-five minutes, and who should walk into the room, but the PA. Of course I tried to ask her questions. She thought I should wait and do another 3 week cycle of the same chemo, but if the chemo hasn't worked after 2 months, I don't think it is magically going to start working. We (me, my mom, and Dan) were really frustrated that we had waited so long, and Dr. H was too busy to see us.. It is so annoying that drug reps don't have to wait as long as patients to see the doctor. We're the ones who are paying the doctor, and we have to wait FOREVER.... Anyway, that is a whole other issue....
Because I had waited so long and Dr. H didn't have time to see me right then, we decided to go ahead with my regularly scheduled chemo (taxol and herceptin). Then when Dr. H had a minute I would go into a room so I could talk with him about the new plan of action.
At 4:00 I was finished with my treatment, and we finally had a chance after waiting a little while to see the actual oncologist. He did a thorough exam, and after seeing what was going on with my chest wall, plus reading through the scan report, he agreed (DUH!) that the chemo was not working. He gave me a couple of options for the next chemo to do: xeloda and herceptin, or gemzar and herceptin. There also were a couple of other drugs we talked about taking after I do a 6 month cycle of the previously mentioned drugs; Avastin, tykerb, adryacmyacin, and taxotere. There are a lot of treatment options and combos out there, we just have to find one that can work against my aggressive cancer.
I am so scared that this is the beginning of the end. I am worried that when I have my brain MRI on Monday, it will show new tumors in my brain. I am worried that I am never going to be off chemo again, and it will be continually changing and trying different chemo combos to try to keep the cancer under control. Getting bad news like this is so scary. I just feel like there is nothing I can do, and the cancer is invading and growing, when I wish it would just go away. This is so difficult. I hate bad news. I wish I could just say that everything is going to be okay, but I just don't know anymore.
I get next week off from chemo, and will start the new treatment the next week. Dr. H's first choice is the Gemzar & herceptin along with the zometa for the bones. Gemzar is supposed to be a pretty mild chemo, and it doesn't cause hair loss. Go figure. I lost my hair for nothing. I am trying not to focus on that, and trying to think of the positive of loosing my hair (cute new wigs, and hats etc.) but when it comes right down to it, I would rather still have MY hair. It is what it is. That is my mantra. It is what it is.
At church on Sunday, we had a Relief Society lesson about worrying and fear, and there was a saying that was shared that has stuck in my head: "Why worry when you can pray?" Worrying about all these things isn't going to change what is, and what will be. So instead of worrying, I'm just going to pray. I would appreciate all of your prayers as well. So, we're not going to worry, we're just going to pray.
Another thing that I keep on thinking of is: No matter how bad you have it, someone has it worse. And no matter what trials you are facing, you can always do something for someone else, whether it is a smile, a card, a phone call etc. I have found that as I have tried to think of others this week, even though I am disappointed in my bad news, I can still find joy and happiness.
And also, it is so hard to feel sorry for myself when so many people do so many small acts of kindness to show that they care. We really are so blessed, and Heavenly Father is looking out for us, and this is His plan, and He will provide for us, no matter what trials or burdens we are called upon to bear.
Maybe hate seems a little strong. Lets try LOATHE instead. I hate the prep for tests, I hate waiting for the tests, I hate waiting for the test results. Suffice it to say then, that I LOATHE the whole experience of tests.
I am concerned that the chemo is not working. I am still having pain in the same places (left hip, femur, pelvis, sternum,) and it is getting worse not better. Plus I am having more headaches and more pain higher up my back. So when I went to the doctor on Wednesday, I requested some scans be done so we can see if the chemo is working. My fear is that if the chemo isn't working, we need to know that sooner rather than later so we can get it changed to something else before the cancer gets too out of control.
So, the tough gal Meridan at Dr.H's pulled some strings and got me scheduled for a PET-CT scan a mere two days later, when at first they told her the soonest they could do the scan was Oct.9th.
I have had a little cold, so I wasn't sure if Dr. H would let me have Taxol this week, but I insisted and he did. Problem now is, the couple of days after chemo, all I eat are rolls, bread, crackers, and 7-up and *gasp* coca cola. Well, to do the prep for the PET-CT scan, you get no carbs the day before or the day of. And you have to lay in bed and rest. No physical exertion or stress. Notice the word stress. I am a mother of 5. If I tell the kids I need to rest, and not to cause me stress, what are they going to do? You guessed it. Have fist fights, and fight, and yell, and argue, and cause me stress. Sheesh.
So, I had the PET-CT scan on Friday, I took some cool pictures of being injected with radioactive dye (doesn't that stuff cause cancer?) and I had the pleasure of enjoying my beverage of choice, barfium sulfate. Only 3/4 a bottle this time however. Now I have to wait until Tuesday to get the test results. I plan on getting to the hospital a little early on Tuesday so I can go to medical records and have my test results in hand and read through, so I can go in armed if we need to make a chemo change. I just feel like you have to take your treatment into your own hands. These doctors are so busy and have so many patients, and I just have one patient to look after. ME. I need to take the best care of myself, and know as much as I can, so I can help the doctors give me the very best care that is needed.
One of the best lines from the movie Kindergarten Cop is when Arnold Schwarzeneger has a headache from the noisy school kids, and one of the kids tells him, "It's a tumor." and Arnold says "It's not a tu-mor" in his accent. Well, I have had lots of headaches, and joke around and say "It's not a tu-mor." But this time, it IS a tumor. Dang it.
When I had my scans done in June, the new tumor growth didn't match the rise of the tumor markers. Then when my tumor markers did another huge jump, my doctor was concerned that I may have something growing in my brain. I have been having localized pain in my head, and some blurry vision in my left eye, and pressure behind my eye. I have also had a little bit of dizziness, and nausea. Once again because I don't like to worry people, or complain, and just want to believe that my symptoms were all in my head (no pun intended) I didn't tell anyone. Not even the doctor.
Anyway, I had a brain MRI on Tuesday August 5th, and then got the dreaded phone call from my doctor at 6:09 p.m. on Wednesday August 6th. I do indeed have a brain tumor. That is the bad news. The good news is that there is only one, it is relatively small at 1.5 cm, and it is in a easily treatable spot. I will have a procedure called gamma-knife when I get home from vacation. It is basically a high dose targeted radiation treatment to the tumor. Because it is targeted, it limits damage to healthy brain tissue.
I will update everyone once I know more, but know that we are doing just fine. We have been enjoying sunny St. George. I've been doing lots of resting and relaxing, and swimming, scrapbookin, game playing, and enjoying family time. We also were able to visit the St. George temple on Friday for a temple session, and then we took the kids there on Sunday evening. Bad news is easier to deal with when you keep an eternal perspective.
We are going to see The Sound Of Music tonight at the Tuacahn outdoor theater. We are all really excited for that. I have taken lots of pictures and will post some when I get back home.
I had my regular treatment of Herceptin and Zometa Tuesday. I also had my blood drawn for tumor marker tests again. You know it is bad news when the doctor calls you personally first thing the next morning. My tumor markers had another big jump. The doctor told me they wished I would have started the Taxol when I had my Zometa/Herceptin infusion. I have been rationalizing the delay, but I know it would be unwise to delay too much longer. The Dr. told me that Her2+ cancer has a higher chance of metastasizing to the brain, and I need to get it under control sooner rather than later. Also there is a chance that the cancer will be resistant to Taxol, so the sooner we know whether or not it will work, the better.
We have a vacation planned August 6-12 and I plan on starting chemo again August 19th. That is only 18 more days. Yuck.
I think it will be harder this time to start aggressive chemo again than the first time. The Dr. told me that the side effects happen sooner the 2nd time. I already know exactly what to expect.
 I do have to share something that brought a smile to my face and brightened my day last week. Early Friday morning, there was a knock at the door. A package was waiting for me on the porch. I didn't remember ordering anything, so was very curious to see what was in the package. It felt like my birthday.
Inside the box was the most adorable, whimsical fairy. This picture doesn't do it justice. It has the sweetest little details, pink ribbons, delicate wings, and jeweled shoes. It just made me laugh! So, thank you to my Grandma Laughter (fitting last name, huh) and my aunts Stacy and Jan, and my cousins, Ashley, Hollee, Shanna, and Ashlyn. The timing was perfect, and I enjoy looking at my cute little fairy every day!
I also received the most thoughtful cards from my Mom and Aunt Cheryl yesterday. It never ceases to amaze me, and shouldn't surprise me anymore, that whenever I am feeling down, my family and friends are inspired to brighten day.
So no matter how down I am feeling, I don't feel that way for very long because of all of the kindness that is shown to me.
 Todays date is June 19, 2008.
I already spent hours here at the hospital on Tuesday, but what a joy, I get to have the pleasure of spending another exciting day at the hospital.
Day of tests, here I come.
I decided to keep a journal of the days events so here we go.
This morning at 7:00 a.m. my alarm went off. I just barely fell asleep at 4:00 a.m. So I am starting the day on only 3 hours of sleep. Not good.
It is time to start "bowel prepping" for my CT scan today.
I open the fridge and see the two, seemingly HUGE bottles of Berry Smoothie Barium Sulfate. They might as well change the name to "Barfium" sulfate. Two 450 ml (appx. 30 fl oz.) bottles of thick, gag making, stomach turning, foul tasting fun.
Honestly, I think the hardest thing I have had to do since having cancer is drink bottles of nasty stuff for tests. It is SO HARD to force yourself to drink these things.
 can you see how thick and yucky this stuff looks?
7:05 a.m.
I have poured 8 ounces of this delicious drink into a cup. I stare at it for a minute or two, dreading having to drink it. I can already taste it. I want to gag just LOOKING at it.
I plug my nose, tip my head back and try to chug the beverage of the day, yet I just can't get it down. As soon as I swallow, it just wants to come back up. I got half of the glass down I tell myself, mind over matter, it is just a smoothie. But I just can't seem to trick my gag reflex.
7:10 a.m.
Finished with the first glass. I rinse my mouth and gargle to try to get the thick coating out of my mouth. Only 3 more glasses to go.
I am SO going to buy myself a box of chocolates for a reward for having to do this.
I set an alarm for 8:45 a.m. when it will be time for the second glass.
8:45 a.m.
I know I have to drink another glass of this stuff. Can't do it quite yet.
8:55 a.m.
Have to drink it. Piano student will be here any minute.
8:57 a.m.
Okay, enough procrastination. I HAVE to drink this NOW.
Chug, chug, chug,. Whoops, it's coming back up. Hold my hands over my mouth trying to keep it down. Can't quite. I loose some of it in the bathroom sink. I have about an ounce of this dose left to drink. Figure if I drink it, it will come back up, so why torture myself. Dump the rest down the sink. I rinse my mouth and run downstairs to teach piano.
10:00 a.m.
I just got done teaching 2 piano lessons, and my 10:00 student is here. I don't have time to be wishy washy and take 10 minutes to drink this dose. So I gulp it down, trying hard not to gag while my piano student is sitting in the other room. It actually went down pretty easy.
10:05 a.m.
My stomach is gurgling and hurts. It SO wants to expel the foul contents that are in there.
10:40 a.m.
I finish teaching lessons. My mom is at my house, ready to take me to the hospital. Ready, set, go. I give all of my adorable children hugs and kisses goodbye. The worst is almost over, I only have one more big glass to drink.
11:00 a.m.
On the way to the hospital. We stop at a gas station so I can buy a bottle of water so I can rinse and gargle after drinking my prep. They had these cutest little breast cancer Chevron cars, and my mom bought me one for a prize if I am brave today.
11:05 a.m.
I drink the last dose of barium sulfate. I drink all of the bottle except for the last inch. I somewhat guiltily throw it away. I figure that cheating and not drinking a little bit of it will be okay. I should have saved it for Dan so he can have the pleasure of sampling what I had to drink.
 This is a picture of a CT Machine. I don't know the actual name of it, but for those of you who have been lucky enough to never needed one of these tests, I thought I would show you what they look like.
11:30 a.m.
We arrive at the hospital. I get checked in at Radiology. They take me back and I get changed into scrubs. A nurse escorts me back to the CT machine, and hands me another glass of Barium Sulfate. This time it was luke warm. Hard to drink it with an audience, don't want to gag and retch. I ask for a glass of water so I can rinse and spit after drinking. Got it down! NOW the worst is over.
The nurse starts an IV so they can inject me with some dye. I climb on a narrow little tray that doesn't seem like it is sturdy enough to hold me. At least they give me a pillow for my head, and a wedge for my legs.
They do the first scans, which only take a couple of minutes. The tech then injects me with the contrast. When this goes into your system it feels like you are standing in front of a furnace. A wave of intense heat radiates from my head to my fingers and toes. Very uncomfortable, and I have an giant wave of nausea. Hope I don't loose it!!!!
11:50 a.m.
All done with the CT scan. A tech from Nuclear Med comes to inject me with some radioactive dye to prep for the bone scan. Now why couldn't they just inject me with something for the CT scan instead of having to drink that nasty stuff?
11:55 a.m.-1:00 p.m
Now that I have been injected with a radioactive tracer something in my blood, we have to wait about 3 hours for it to travel to my bones before the actual scan can be done.
So, I get a break from tests for a little while. My mom takes me to lunch at TGI fridays. It felt so good to get something other than Barium sulfate in my stomach. By the time we are done eating, I am in the bathroom sick. Ah well..
1:15-2:45 p.m.
We have time to go to the mall. What a bonus!!!! I even got my box of chocolate from Sees. I spent more time in the bathroom at the mall than I did shopping, but at least I have my chocolate to enjoy tomorrow once my stomach *hopefully* feels better.  3:00 p.m.
Time for my bone scan. This takes about 30 minutes. They scan to check for tumors in the bones. I LOVE the techs at NucMed. They are the sweetest, kindest, best employees in the whole hospital. ;o)
You lay on a table and this big machine scans your bones from head to toe. I have been injected with some kind of nuclear tracer. It will make "hot spots" show what is going on. All I know is that it is a heck of a lot easier to just be injected with something instead of having to drink something. And then to top it all off, I read online that sometimes if you have had barium recently, that it can mess up the results of the bone scan. What I read said that I should have had the bone scan before the CT scan, but it is too late now. I am not redoing either of those tests.
3:40 p.m.
All done!!!!!!!! Easy!
My sister in law Katie had a baby yesterday, so I took advantage of the fact that we were already at the hospital and went to visit. Her baby is ADORABLE!!!! I love holding new born babies. Her skin was so soft, and she made the cutest noises and pulled the cutest faces while she was sleeping. A perfect end to the day.
5:30 p.m.
We make it home, after my mom dropped me off at Dan's work so he could drive me home. I am greeted with hugs and kisses. I insist that I am radioactive so the kids have to stay away and let me rest tonight.
Now I just have to wait to the doctor and get results. The waiting is almost as hard as drinking Barium Sulfate.
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