For this blog post, I thought I would share the answers to some frequently asked questions. For those who have wondered, and for those who maybe were afraid to ask some of these questions, I am more at peace and able to talk about this whole hospice and preparing to die thing.
QUESTION? What is hospice? I thought it was something people had right at the very end of their life?
ANSWER: A person can have hospice once their life expectancy is 6 months of less. The benefit to having hospice care start sooner rather than later is they can do a better job at pain management and making your last days, weeks, or months as easy and high of quality as possible. The doctor comes to your home so you don't have to drag yourself out to a doctors office when you are feel terrible. They bring your meds to you, and know right what to give you to help with whatever is causing you pain or discomfort. Hospice also offers emotional and spiritual help with a counselor and a chaplain if needed, They help the patient and the family. My nurse is so kind and caring. She is great with the kids, and always checks up on me, and visits a couple times a week.
QUESTION: How are you REALLY feeling?
ANSWER: I REALLY am feeling pretty good, and a whole lot better than I thought I would be when it was time for hospice. I am really tired. It is a different kind of tired. I sleep really deeply for long periods of time. I go to sleep at night, and then sleep until 11am-12:00pm. A good solid 12-14 hours. Once I wake up for the day, I am up for most of the day. I occasionally need a nap late afternoon or evening. My pain is honestly managed wonderfully. I have different meds for each of the different kinds of pain I suffer from. It is truly amazing how well hospice doctors and nurses are at finding the cause of my pain, and treating it. I am also doing really good emotionally and spiritually as well. Like I said in my last post, I truly am at peace. So I am doing better than I expected, and when I say I'm doing pretty good, I really am pretty good.
QUESTION: How long do the doctors give you?
ANSWER: My oncologist gave me 3 months to live back in the middle of April. So if we were going by the Oncologist's prediction, I only have a little over a week. So unless something completely unexpected happenes, I can safely say that the oncologist was wrong. (THANK HEAVENS!!) However, according to my hospice nurse, I am doing way, way, better than they thought I would. I am still able to eat, haven't lost any weight, and still am awake for about the same amount of time as I am sleeping. Dan and I are planning on a cruise on July 16th kind of as a celebrating that I'm still alive kind of thing.
Seriously, though, I have no idea when I am going to die. We hope that I make it through the summer and to my 31st birthday which is September 15th. I don't know when I am going to die any more than YOU know when you are going to die. All I know that it is going to be a whole lot sooner that I would have hoped, even though I have survived terminal IBC cancer way longer than the statistical 6-12 months. It has been over 2 years that I have had stage 4 terminal cancer.
QUESTION: What can we do to help?
ANSWER: Our physical needs are being met so well by family and friends, it is hard to ask for more help. Prayers are always needed and welcomed. Whatever you may be feel prompted to do is probably the best thing to do to meet a need, So many times our need are met without us even asking for help. P.S. Chocolate is the best medicine! (Only half kidding..... LOL)
QUESTION: Can I come visit you?
ANSWER: I don't get out of the house very often, so I love to have visitors. I do sleep a lot, and some days I don't feel too great, so we ask that you call first, and we will let you know when a good time to visit would be. And if you are feeling under the weather at all, please don't share germs. Wait until you are healthy to visit.
So, there are the answers to a lot of questions that we receive.
I have had a difficult time feeling like I want to write anything for my blog. I am so grateful to Dan for his last couple of posts. I am glad that he wrote such touching posts, and I am amazed that he did it all on his own.
The reason it has been difficult to write, is that I have been hesitant to share what has really been going on with my cancer and treatment. So it is confession time.
2 months ago, after much researching, praying, talking with counselors, doctors, and family, we came to the realization that chemotherapy was no longer a viable option. I was so deathly ill from doing 9 months of various chemos, and all the test results kept coming back that that the chemos were not working. I had no quality of life, and I felt like I was just wasting the time I had left chasing after treatments that were killing me, and not the cancer. We decided that the time had come to stop chemotherapy, and change from aggressive care to palliative care.
I have had hospice care for the last 2 months. It is truly a miracle how much better I feel now that I am no longer poisoning my body with toxic chemicals in hope of having a longer life. I was not living while I was on chemo. All I did was sleep and feel miserable all the time. With my new hospice Doctor and Nurses I feel so much better. They are so on top of keeping me pain free and comfortable. I am able to do so much more, and feel so much better. It has been a great decision. I am still going to have monthly Zometa infusions to keep my bones from breaking as the cancer progresses. We also have a social worker who has been visiting weekly with me and the kids. He always brings a fun activity that gets the kids talking about how they are feeling. He also has been a great sounding board for me, and has helped me deal with the gamut of emotions that I have been dealing with. With this hospice team in place, they are taking wonderful care of all of our needs.
At first when I stopped chemotherapy, I really struggled emotionally. It was so difficult to feel like I was giving up. It is still hard to think about dying, but I feel mostly at peace. I am enjoying every minute, and we have been cherishing the good times. We are happy and at peace. I know that my life is in Heavenly Father's hands, and that He will preserve my life for as long as I need to be here. I don't need treatments of men to prolong my life. I know that I will be here for as long as I am supposed to be. I trust that my Heavenly Father is taking care of me, and we are at peace.
I have read several books these past couple months about death and dying, life after life, and about hospice stories. This knowledge has brought peace to my heart, and a small part of me looks forward to what comes next after life. I know that I will still be here for my family, and that I will have an active role in their life. I know that I will still be there for all of their weddings, graduations, baptisms, births of grandchildren, and family events. I know that the life after this one is glorious and wonderful, and that I will be with my loved ones who have gone on before.
I have one request from all of my dear friends and family. We are at peace with my decision to no longer fight my cancer. I don't need to hear about this miracle diet, and that Doctor that can cure cancer in Mexico, or this new chemo trial or drug.. My destiny is not to have my cancer cured. We understand that, and it is okay. I have done all that I could physically endure to fight my cancer, and I have no fight left in me. And that is okay. I fought hard, and I won so many battles. It is a miracle that it has been 2 years, and I am still here. I am eternally grateful for every day of that 2 years. I have been blessed, and I am continually blessed every day. Life is still good.
I know it has been a really long time since I have last blogged. I have just been unmotivated to get on the computer. I spend my limited energy with my family, and whenever I have a chance to sit for a minute, I fall asleep. I have been really unmotivated and have felt uninspired. I just don't have a lot to say right now.
Life has been really good the last couple of weeks. We had a wonderful time in San Diego. It was such a beautiful city, and we made so many great memories. I wanted to capture each memory so we can remember it all, so I took over 500 pictures.
My last test results were bad again. The chemo isn't working, and it kind of feels like I am out of options, and just tired of the fight. It has been a month since my last chemo treatment, and I have been feeling so much better with all of the toxic chemo elements in my body. I have a new home health care team, and they have redone all of my pain medications, and added new prescriptions to help with the different cancer symptoms I have. It has made a huge difference in the quality of life I am experiencing. Most days are really good days, and I am able to do a lot of things with my kids. I do have days where I crash, and spend the entire day sleeping, however those are only after I have overdone it on good days.
So, that is what has been going on lately with me. We are just enjoying spending time with family and friends, and enjoying every minute! And one of these days when I am feeling more motivated, I will share more info about our recent trip to San Diego and put some pictures up on the site. To all of those of you who read this, Thank you always for all of your love and concern, prayers and support!!!!
No news is not really good news. I received bad news with my tumor marker tests. My tumor markers went up about 20% to 104. That was even with taking an extra 500 mg of Xeloda a day. Obviously Xeloda is not working to kill the cancer. I am stopping chemo for a while. I see no sense in making myself sick when the cancer continues to grow anyway. I am looking forward to having some quality time.
I know I tend to gloss over how miserable I really am on the blog because I hate to complain. I have had so much pain from the cancer, that I haven't been sleeping well, and my dosage of pain meds is continually increased. I also have tumor growing in my armpit that is growing on a nerve which makes my hand numb and tingling and pins and needle like pain. It is hard to type. I have no strength in my hand, it is almost useless. I can't play the piano very well, scrapbook, tie shoes, button things, etc. It is so depressing at times.
As if life wasn't hard enough, Saturday night Dan started having intense pain in his abdomen. Sure enough, appendicitis. So we spent Sunday at the ER, and Sunday evening they took him in to have his appendix removed. Surgery went well, but he is in pain from surgery. He is hanging out with me in our family room. What a pair we make!
Dan booked a trip for us last week to go to San Diego to celebrate 2 years of surviving cancer. We are supposed to fly out on Sunday. Hopefully he is recovered enough that we can go and enjoy! I have always wanted to go to Sea World and the San Diego zoo. He says he will be just fine. I am on new pain medicine so I can hopefully be able to go and do while we are there.
Life hasn't been all bad. We've celebrated Abby's 9th birthday and Bekah's 11th birthday. We went and saw the flowers at Temple Square in Salt Lake. 2 weeks ago, Dan and I went to the Tulip Festival at Thanksgiving point. That was truly amazing! We stayed the night down there, and I am so glad we had that time together, just him and I. We've spent a bunch of time enjoying life and family, and making memories.
This last weekend we went to Park City with Dan's family. That was fun. We go every spring, and the kids have a lot of fun playing with their cousins, swimming, and going shopping at the outlet mall. I had to take a lot of naps and take a lot of pain medicine, but we still had a fun time (even though Dan was in pain from his appendicitis.)
 Me and Dan at the Tulip Festival.
 Me and the kids at Temple Square.
 This Easter, I pondered a lot on the Resurrection of Jesus Christ. On Easter Sunday, my daughter Abby gave a talk in Primary about this subject. She said, "I know that my mom will be resurrected, and that all of her scars will be gone, and her hair will be back." I was so touched by this, and have since been thinking about that a lot. As I feel my body getting sicker and sicker as the cancer continues to grow and damage it, I found hope! Even though my body is slowly dying as the cancer ravages it, this will not be the end. I will be resurrected, and all of my scars will be gone! I will be pain free, and have energy again! What a joyful thing! I am so grateful for my Savior, and for His sacrifice!
 Spring is my favorite time of year. I love seeing the flowers bloom. In the fall I planted bulbs with my mother in law, and I remember wondering if I would be here to see them bloom. I am so happy that I am still here, and have such delight in seeing my bulbs blooming. It is a miracle that these dead looking bulbs come back to life. As the days get warmer, and the rains come, they wake from their slumber, and begin to grow. Their bright colored blooms also remind me of the resurrection. When you compare the beauty of the flower to the withered and gray bulbs, you realize that that is what the Resurrection will bring. It will restore the weak and frail body, to one that is bright and shining; one that is strong and healthy, free from disease. Though my body is more like the bulb now, one day I will be a blooming flower.
I can't believe how long it has been since I last wrote something for my blog. I just don't really feel like I have anything inspiring or interesting to write about. I completed my week of chemo, and spent the next couple of days still feeling really yucky. I still feel SO tired all the time. My pain is getting worse in my hip and shoulder. My mood lately would best be described as BLAH.....
I can't wait for sunny spring days. The sun makes me feel so much better.
I am supposed to start another week of chemo pills tomorrow. I am going to put it off until Monday night because I bought tickets to the Utah Jazz game on Monday. Our family is really excited for it.
I just don't have a lot to report about what has been going on lately. All I do is rest, feel sick, rest, sleep, feel sick, and then sleep some more. Very Blah life.
I went out to lunch and dinner on Friday. I went to lunch with my mom and sisters, and 5 kids under the age of 3. That was fun, but stressful. The kids got bored and were doing a choo-choo train around the restaurant. We did get free Asphalt Pie because it is my Mom and Sisters birthday this week.
Then Dan and I went out to dinner with some friends on Friday night which was really fun, except I got really tired. I can't eat much, but the company is great, it's always fun to talk and share some laughs with good friends. Plus I have a fridge full of leftovers!!
Saturday night we went to my Mom's house for her birthday. It felt great to finally get out of the house after almost 2 weeks of being home bound. I even missed church last Sunday. I am hoping I make it there tomorrow morning.
So there it is, my very blah update. Next week should be another blah week with having chemo pills and I have to go in for IV chemo again on Tuesday. That's why I have to live it up this weekend and Monday, because come Tuesday, I'm going to be sick again..... blah blah blah......
I began my chemo pills again last night after having several weeks off. It has been 4 weeks since I have had IV chemo either. It has felt so wonderful to be able to eat and enjoy food, enjoy family events, go on vacation, and have a little more energy while I have had my little chemo break.
Having metastatic cancer causes so many problems by itself; pain, fatigue, stomach issues etc. When you add chemo, you just add a bunch of other problems. During my chemo break I was able to do so many great family things like my sister in law's wedding, going out to dinner as a family, going to the Draper temple open house, and of course our vacation to St. Maartin.
As much as I have enjoyed my weeks off from chemo, it is time to start the fight again. There was a part of me that really didn't want to start chemo again. The chemos that I am on only has a 20% chance of slowing the cancer. I realize that if I don't take chemo, I have a 0% chance. As difficult as it is to suffer the side effects, I feel like I have to TRY to do my part in fighting this disease. I need to know that I did my part to be here for as long as possible for my family.
I am being a glutton for punishment this week. Not only am I doing my oral chemo pills, I am going in for IV chemo today. I figure if I am going to be sick, I may as well double up and be really sick all at once. Plus I had to have an infected ingrown toenail removed yesterday. Due to chemo my nails grow all wonky, just another lovely side effect of my cancer treatments.
Needless to say, I am going to be flat in bed the rest of the week. My sister in law brought me some movies including the Anne of Green Gables movie series. So, I am going to have some great entertainment! I am always so grateful for all of the thoughtfulness of friends and family. My family and I am taken such good care of. I am always so grateful for the meals brought in, and thankful for the friends who take my little boys every afternoon so I can nap. If we weren't taken such good care of, I know I wouldn't have the energy to fight!
When I was first diagnosed with cancer, I spent hours searching the internet, trying to figure out how long I would survive this deadly disease. Based on my research, with my stage of cancer and with the treatment I was doing, the median survival time was 15-22 months after diagnosis. I just past 22 months yesterday. I am so grateful and humbled that I am still alive. It is a miracle that my life has been preserved. Based on studies and statistics, I should be dead. But I am still here, and in remarkably good condition, for a stage 4 cancer patient.
These 22 months have been filled with the most exhilarating ups and the darkest lows. I have had times where I have been happier than I had ever been, and experienced the most touching miracles, big and small. I also have had dark days and nights, where I didn’t think I could survive another day, where I felt great despair about my condition, and times where I feared greatly.
Through it all, I have been blessed with so much love and service to help me when I didn’t think I could go on. I know my survival is a miracle, and I don’t think I could have made it without all of the service rendered to us. If I didn’t have the opportunity to rest, thanks to those who help watch my children, I think it would be a lot harder for my body to withstand cancer and its treatments. We have been blessed with hundreds of delicious meals, which are so wonderful because I don’t have the energy to cook. Not only has our family been fed, but our spirits have also been strengthened by the support.
My cancer journey has definitely been a marathon. I am so grateful for all those who have ran with us, step by step, through the difficult terrain. I know that all the prayers that have been offered up have helped me and my family continue on, even when we feel like we don’t have the strength to continue. I am so grateful for all the people who have helped carry our load, so we can run the race without extra weight hampering our fight.
I am hopeful that I will live many months past my expiration date. I hope I don’t start to mold or start to stink now that I am past my expiration date. I plan to live every day as fully as possible, and I still feel now more than ever that every day is a gift. I have lived every day more fully, enjoyed every little moment, and been grateful for every day that I am still alive. I encourage all of you who read this to do the same.
 This is our most recent family picture. It was taken last night at Dan's little sister Kristina's wedding reception.
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.
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.
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