To start off, I thought I would give a quick status update. I had some really bad pain issues these past few weeks. I had some new pain down my back, which was nerve pain that caused pain all the way down my leg into my foot. I was suffering the most since I went on hospice. Finally on Monday I was feeling better. My nurse and doctor worked daily adjusting medicines and doses to try to relieve my pain. I am so glad they were successful. I was worried to have new pain, and it is discouraging to know that the cancer is growing and spreading and getting worse.
Because I am on hospice, I can no longer have scans done to see where and how much the cancer is growing.. The assumption is that the cancer IS growing and it will eventually get to the point where it kills me. Hospice's role is to keep me comfortable while this happens, not prevent it from happening.
When I stopped chemo, I felt guilty. I thought maybe I should research different trial drugs or something. I felt that choosing to quit chemo was choosing to die. Dan always says that deciding to do chemo is not necessarily deciding to live, because the chemo may not work and you die anyway. Or, the chemo does damage to your liver and heart (like it was doing to me) and you die quicker. Choosing not to continue chemo is not choosing to die either. I did not choose to get cancer, so choosing not to poison myself to maybe slow down the cancer or shrink it, is not choosing to die.
The only choice I have is how I live each day I have. How I choose to treat those around me, how to make every day count. That is all any of us have. Life is not guaranteed. I realized this again when a dear friend of ours died suddenly from blood clots after having knee surgery. He was only 41 years old. How grateful I am to KNOW that I am dying, and to have the time to prepare. I don't think I will ever be ready. How could I be ready to leave my friends, family, and my children. Ugh. Sorry for be such a downer!
Summer is 2/3 over, and I can hardly believe it! We have been living each day to the fullest. We have enjoyed a trip to Wolf Creek and a week at Bear Lake. Dan and I have enjoyed 2 Friday night stays at Anniversary Inn in Logan. We have been in a parade, watched fireworks, went swimming, had picnics and backyard bar-b-ques. Dan and I went on a 4 day cruise to Cabo San Lucas, Mexico. It was very relaxing and I was surprised how much I was able to eat! As Dan said in his recent post, I am sleeping a lot, and most days I don't get out of bed until 2pm. I plan on the rest of summer to be just as fun, although a little slower pace. Every day I live is a gift. Every moment is precious.
Dan and I at Anniversary Inn
Bear Lake July 2009
The biggest difference in my life since I stopped chemo and went on hospice is the quality of my life. I was so sick on chemo, and I wasn't living. I would go days without getting out of bed. Now I am up and about every day, even though I still sleep a lot. I feel good, I really do. There are times when I am completely pain free if I remember to stay on top of all my meds. The biggest challenge I face is still being tired, and wearing out quickly. I don't have a lot of energy, and I need a lot of sleep. However, I feel a thousand times better than when I was so sick from the chemo.
My hospice nurses are also amazed at how well I am doing. They tell me often that I am holding up way better than they thought I would based on when they first met me. I had just completed 8 months of chemo, and was so beat up from it. As my body has healed from the chemo damage, I have been able to eat more, and therefore have more energy. Words can not explain how miserable I was, and how much better I feel now. I just pray that the medicine continues to keep me as comfortable as possible.
I wish I didn't sleep as much as I do. It makes me feel like life is just slipping by while I sleep. I miss so many minutes and hours with my children, but I am so grateful for the help of my mom and mom-in-law spending the whole day helping me and caring for the kids.
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.
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