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!
When I began chemo again back in August, we were told that I would probably be on chemo for 6 months to shrink the tumors back down. It has been 6 months, and the tumors have not shrank. They are a little bigger, and my last tumor markers went up again. Dan had originally wanted to plan a trip in February to celebrate the completion of chemo. It is February, and because the chemos haven't worked, there is no end in sight.
Even though I am not done with treatment, we are going to go away on vacation anyway, just to celebrate life. We used to say "someday we should do this." or "someday we should go there". When your somedays become limited, and your life is going to be a lot shorter than you planned, you need to make your somedays into todays.
Dan has been planning a trip to celebrate the completion of 6 months of chemo. I told him I wanted to go to a warm tropical island, where I can relax, swim, and refresh. He has been planning a trip to St. Martin/ Sint Maarten. I have tried not to get excited, because I didn't dare. I was too afraid that I would be physically unable to travel due to my condition. I haven't allowed myself to look forward to it. Now all of a sudden, it is time to go! This last week I have finally got on the internet and looked at stuff to do, and about this island. I have finally allowed myself to get excited this last week.
Back when Melissa was planning the Run for Amber, she hoped we would earn enough money to send our family to DisneyLand, and maybe even enough so Dan and I could also take a trip together. Due to the overwhelming success of the fundraiser, we were able to pay off all of our doctor bills from last year, have money to pay doctor bills this year, and go to DisneyLand and this trip.
We are so excited and grateful to all who have made this possible. It is going to be so wonderful to spend time with my hubby, and relax and get away from the worries and stress of cancer. This is going to be another dream come true. It is going to be hard to be away from the kids for 9 days, especially little Ammon and Caleb. I hope I don't miss them too much to enjoy myself. They will be in good hands with Grandma, though.
 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.
We got good news on my brain MRI last week. My brain tumor has continued to shrink, which is good, and their are no new visible tumors, which is really good. I was so afraid that I would have new brain tumors, and am so thrilled that I didn't. I finished another week of Xeloda. The new nausea meds, Kytril, made last week a lot more managable. Of course it always has it's price.... A 30 day supply costs $2000. Yes that is $2000. Because it is a new year, (HAPPY NEW YEAR!) our deductibles are all reset, so when it is time to refill it, it will cost us 50%, or $1000. It is nearly impossible to put a price on preventing nausea. I plan only taking the minimum amount of pills, and I think I can stretch my 1 month supply to at least 2 months. Once we meet our $5000 out of pocket for the year, the insurance kicks in at 100%. How incredibly relieved and grateful we are not to have to worry about where the money will come from to pay the mounting doctor bills, thanks to the wonderful generosity and success of the Run 4 Amber Fundraiser. We were able to pay off all of our outstanding doctor bills for 2008, and start fresh for 2009. In just a few short months those bills will mounting, and we already have money from the fundraiser to pay these. You can not understand the stress relief this gives our family!
Don't get me wrong, I am grateful that I have survived this aggressive disease for almost 20 months, but the surviving is pricey. I half wonder if I am worth it..... Fighting cancer is hard. I always feel like such a burden on my friends and family, and especially my husband and children. Even though I know there is a purpose for suffering, I long to reach the point where the suffering ends. The optimum end would be a miraculous cure, but the alternative end would be death.... I just try to find at least one small thing each day to help me find the will to continue to fight. Whether it is spending time with family, a phone call of visit from a friend, a husband who tries to meet my every need, and NEVER complain, hugs and kisses from my kids, smiling, laughing, praying, looking out the window and watching beautiful snow, listening to music, playing the piano. Each of these small things can give me the burst of hope that I CAN endure, that it IS worth it, and that I am BLESSED because of my fight against cancer. So even when the day comes that cancer wins the battle that takes my life, it can not take all of the life that I have LIVED. So when my obituary is written, it better not say "She lost her battle against cancer." Because I win my battle with cancer each and every day. A day without laughter is a day wasted
Charlie Chaplin
I had my follow-up consultation for my brain tumor with the radiation oncologist today. We finally got some good news! My brain tumor has shrunk to little less than half its original size in the 6 weeks since I had gamma knife, and no new brain tumors. The rad. onc. said that usually it takes about 3 months to see this much of a response, so it was really good news!! It's about time! Lately it seems like we have just had bad news, so it is refreshing to actually have good news. I had myself mentally prepared for bad news, so I almost don't know how to react to good news. Now we just need to get the cancer under control in the rest of my body.
I have been having so much pain in my left hip from all of the cancer growing, that we had to increase my pain meds, and I still have to take additional pain killers for breakthrough pain. We discussed with the radiation onc about the possibility of doing radiation on my hip so I can get some pain relief. The plan is to try the new chemo for a few weeks, and if my hip doesn't start feeling better, I will take a little break from chemo and try some radiation. If the chemo works to kill the cancer cells, then that should give me pain relief. So either way, it looks like pain relief is in the future.
The brain MRI did show that I have some sinus problems in my left frontal and anterior sinuses, so that is actually what is probably causing a lot of my headaches, and not the tumor. I will try to find time to visit a ENT Dr. about that. As if I don't already have enough doctors appointments, etc.
Thank you everyone for caring so much about me. Your prayers and well wishes are so appreciated. I am truly humbled by all the love and support that we are shown. We really could not bear the burden of this trial without all of the hands that help to lift the weight of it with all of your willingness to serve and help us. Please know how much we love you all, and we are so grateful for everything all of you do to help us. Even though having cancer is so difficult, and the treatments etc. are almost unbearable, I am still so grateful because of all the little miracles I have seen, and even more so, to be the recipient of so much caring and kindness. Unless we taste bitter, we can not enjoy the sweet. And the sweetness of all the service and love that we are shown makes our lives sweet indeed.
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 took the kids to the park the other day, and I just had to share this picture of Ammon. My children bring me so much joy, and the little things like this are why I keep fighting my cancer. So I can be here for the big things, and also the simple little pleasures of life. Just had to share!!!
On a not so happy note..... Well, this is kind of hard to type... I hesitate to share this, but I know this is why all of you wonderful people check my blog for updates. Because you want to know how things are going. This wouldn't be an effective means of updating if I didn't share what is going on, right?
I talked to the doctor today when I had treatment, and they are concerned about the rising tumor markers. At first, they said maybe they would wait a month and then run the blood tests again, however, after the doctors discussed my situation, they decided that maybe it would be best to do some scans. They want to see what is going on, see if the cancer is growing, and check and see if it has spread anywhere else.
Regarding the tumor markers, I guess they have almost doubled in the last 3 1/2 months. They went from 28 in February to 51 in June. I asked the Dr. today if the rising tumor markers could be from something else, but she said, "In your case, probably not."
So, I will have a CT scan tomorrow, and a bone scan on Thursday. I am not sure when I will get the results. I was really hoping to not have to do tests again until after the summer, but I think it is better to know what is going on, rather than just worry and wonder.
The doctors said today that the treatment options are to first change my hormonal drug from Aromasin to something else. The other option is to start another chemotherapy drug. Dr. Hansen said that he would rather wait to start another chemo drug, because he doesn't want me to run out of treatment options too early.
I really don't know anything for sure right now. I am dreading the CT scan. Well, not exactly the test itself, but the prep for it. I hate drinking that barium sulfate. 2 big bottles of it. yech!!!! You know, the "berry smoothie" stuff. What is even worse, is that I had treatment today, and I really don't know how I am going to get that stuff down. I will just do my best.
I would appreciate all of the prayers and positive vibes you can give. I know that they help so much. I know that everything is going to be okay, and that whatever happens is part of Heavenly Father's plan. If we never experience pain, trials and sadness, we wouldn't appreciate the simple joys and happiness of life.
I am holding out hope that I don't have any new lesions, and that the rising tumor markers are just a fluke. A girl can hope, right?
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