Friday was my last day of IV interferon. I no longer have to go to Kaiser daily. It turned out that Friday was different than I imagined it would be. I had an appointment with my oncologist. We reviewed part two, what to expect and how I am right now. I questioned the healing of one of my surgery incisions, the one where the lymph node was removed. He immediately referred me to a surgeon as it was a bit infected. The surgeon opened up. The pain killer he gave me did not work sufficiently and it was one of the most painful experiences of my life! Nancy was with me at Kaiser. I told he this is the worst day of my life. She assured me it was not....but I had a hard time agreeing with her. We then went to the infusion room for my last treatment and to learn to give myself injections (part two). I was greeted by a huge bouquet of balloons from the Crones (my precious most wonderful group of women friends of which I could write a book about!). It was a full day. Unfortunately the celebration of being done with the infusions was dampened by the painful incision.
A new unexpected challenge. The surgery site has to be kept open so it will heal from the inside out. It previously had healed at the skin, but inside it had not. So, Danny has to remove packing daily and put new packing in it. I guess the nerves are all jumbled up from surgery as this process is absolute torture! I know this too will pass. I feel like my celebration of finishing the infusions was robbed. I also know this is all very minor compared to what most of the people who were being treated in the infusion center are dealing with. My positive outlook is being challenged.
Sunday night I gave myself my first injection. Another accomplishment. I will be doing injections on Sunday, Tuesday and Thursday. So healing days will be Monday, Wednesday and Friday. I am taking one day at a time and will see how all of this unfolds.
Today, Monday, I am going to try to stay relatively still. Hopefully my wound will benefit from little movement and will heal.
I have been all consumed with healing from surgery and the month of intense interferon I have not even begun the work that is important to me. What does this whole experience mean to me? This has been a life changing event. Coming to answers is part of what I hope to do in part two. For right now I am back to focusing on the surgery site healing and regaining my physical and emotional strength. I know there is overwhelming challenges in the world and I feel it is important to be conscious of this. In my little world I have so much to be joyful for and that is my focus. Joy and love give me strength.
Monday, November 2, 2009
Saturday, October 24, 2009
Fatigue
Side affects to interferon are aches and pains like when you have the flu and fatigue. I have had both for the past 3 weeks. I am getting tired of feeling generally blah. For the first 2 1/2 weeks of treatment I was sleeping about 12 hours a night. I couldn't stay awake much past 7. This week I haven't been sleeping as well. The good part of sleeping has been sleeping through the pain. Now that I am not sleeping as well I tend to also feel more uncomfortable. The good news is that I have one more week of this intense treatment. I then go to the next level of treatment, which will be injections of more interferon 3 times a week. Hopefully the symptoms I have been experiencing will be reduced.
I am so grateful to all the angels who drive me to Kaiser. I continue to be touched deeply by the calls, cards, emails, flowers and good thoughts. You all give me strength.
I am so grateful to all the angels who drive me to Kaiser. I continue to be touched deeply by the calls, cards, emails, flowers and good thoughts. You all give me strength.
Saturday, October 10, 2009
Hooray, one week complete!
Monday was my first day of treatment. Monday night was a nightmare. I was miserable. I was terrified of having to do this for 19 more days.
I am generally a planner. I schedule my time to be efficient and productive. This experience is challenging me to stay present and not to think much about the future. Live for now. Be here now.
Thankfully each day got better this week. Even with each day being better I find around 2 in the afternoon I start to get anxious wondering what tonight will be like. I am 25% done with the intense first month and I now feel confidant I can handle this.
My daily vision is if there are any unwanted satellite cells in my body that this interferon treatment is going to confuse the heck out of those cells and they are going to fall apart and leave.
I seem to be having a typical reaction to the interferon. I feel a bit achy, sore muscles, low energy and a general blah feeling. It isn't fun, but it is manageable.
All of my caregivers at Kaiser have been outstanding. My oncologist, Niccoli, is the father of 3 wonderful children all who Danny taught. Each year Danny has a special connection with a few of the families he teaches and Niccoli's family is one of those. It is extra special to have his support for me and for Danny.
I have the weekend off. I am looking forward to a terrific Sunday and fantastic Monday (at least until 3:30).
I am generally a planner. I schedule my time to be efficient and productive. This experience is challenging me to stay present and not to think much about the future. Live for now. Be here now.
Thankfully each day got better this week. Even with each day being better I find around 2 in the afternoon I start to get anxious wondering what tonight will be like. I am 25% done with the intense first month and I now feel confidant I can handle this.
My daily vision is if there are any unwanted satellite cells in my body that this interferon treatment is going to confuse the heck out of those cells and they are going to fall apart and leave.
I seem to be having a typical reaction to the interferon. I feel a bit achy, sore muscles, low energy and a general blah feeling. It isn't fun, but it is manageable.
All of my caregivers at Kaiser have been outstanding. My oncologist, Niccoli, is the father of 3 wonderful children all who Danny taught. Each year Danny has a special connection with a few of the families he teaches and Niccoli's family is one of those. It is extra special to have his support for me and for Danny.
I have the weekend off. I am looking forward to a terrific Sunday and fantastic Monday (at least until 3:30).
Wednesday, September 30, 2009
New Beginning
I am really recovering from the surgery. I walked about 1.5 miles the other day. Yeah, a big accomplishment! I walk slow...but I can do it!! I am physically feeling almost normal again. So it is very strange that I continue to have medical challenges.
I made the choice to use the only treatment Western Medicine has to offer someone in my situation. Treatment begins on Monday. This October will be different than any other in my life. Monday through Friday I will be at Kaiser from about 3:30 - 5:30 for treatment. The plan is to get treatment in the late afternoon and go home and sleep off any side affects I may have. During the day I will hopefully have energy to exercise, meditate, spend time with those I love and doing activities I love. If there are any unwanted cells in my body, they will go away! My focus is to believe in heart and soul that this treatment is going to work for me!
I did this once before, except it was with radiation treatment. I believe in the power of the mind and the ability to help heal and not let the disease return. I did it once before and fully intend to do this again.
I have had a wonderful life and I have a wonderful life,. Still I am sad that I have this chapter I am currently living. All the gestures of love, cards, encouraging words, support for me, and for my family is what gives me strength each day. The appreciation and gratitude I feel cannot be fully expressed.
I made the choice to use the only treatment Western Medicine has to offer someone in my situation. Treatment begins on Monday. This October will be different than any other in my life. Monday through Friday I will be at Kaiser from about 3:30 - 5:30 for treatment. The plan is to get treatment in the late afternoon and go home and sleep off any side affects I may have. During the day I will hopefully have energy to exercise, meditate, spend time with those I love and doing activities I love. If there are any unwanted cells in my body, they will go away! My focus is to believe in heart and soul that this treatment is going to work for me!
I did this once before, except it was with radiation treatment. I believe in the power of the mind and the ability to help heal and not let the disease return. I did it once before and fully intend to do this again.
I have had a wonderful life and I have a wonderful life,. Still I am sad that I have this chapter I am currently living. All the gestures of love, cards, encouraging words, support for me, and for my family is what gives me strength each day. The appreciation and gratitude I feel cannot be fully expressed.
Friday, September 18, 2009
Decsion making
The past 9 days have been filled with research, learning about my possible options in regards to possible treatment for stage 3c melanoma. The educational process has been all consuming. Sierra and Alan have also spent numerous hours on this too. Knowledge is power. I have had the love and support from family and friends which is helping me make decisions too.
After exploring all the clinical trials in the United States for stage 3 melanoma, it has come down to 2 possible options in San Francisco. One trial is for something that has not shown to be successful for any other kind of cancer. The other trial is for something that is showing the most success of anything in regards to melanoma in trials to date, but 50% of the people receive a placebo and no treatment. After talking with both of my Dr.'s, family members and a few friends I am currently thinking on not doing the trials.
I am also clear that I want to do something. I would probably have a lot of regrets if I didn't try something and the melanoma came back. It looks like I will be doing the only FDA approved treatment of interferon. Actually the approved treatment is for a year. There are trials of doing only one month. These options are still undecided.
Yesterday, I saw Dr. Powell. She really understands me. She said to not dwell on the statistics. Each person is a unique test tube. The statistic for each person is either 100% or 0%. Live your life like the surgery was 100% successful and at the same time treat the situation with what is available and believe you are the person the treatment will be 100% successful. She also emphasized that because of my situation, be sure to celebrate every thing I can possibly celebrate. (Of course this is true for everyone,) How interesting I named the blog Ellen's Celebration of Life!
I have been more sad, serious and a bit depressed the past nine days than maybe anytime in my life. I leave today for La Jolla. My intention is to get rejuvenated and return home with more energy for the next chapter.
As I continue making decisions I do my best to have Gratitude for my wonderful life, full of opportunity, and the best family and friends one can have!
After exploring all the clinical trials in the United States for stage 3 melanoma, it has come down to 2 possible options in San Francisco. One trial is for something that has not shown to be successful for any other kind of cancer. The other trial is for something that is showing the most success of anything in regards to melanoma in trials to date, but 50% of the people receive a placebo and no treatment. After talking with both of my Dr.'s, family members and a few friends I am currently thinking on not doing the trials.
I am also clear that I want to do something. I would probably have a lot of regrets if I didn't try something and the melanoma came back. It looks like I will be doing the only FDA approved treatment of interferon. Actually the approved treatment is for a year. There are trials of doing only one month. These options are still undecided.
Yesterday, I saw Dr. Powell. She really understands me. She said to not dwell on the statistics. Each person is a unique test tube. The statistic for each person is either 100% or 0%. Live your life like the surgery was 100% successful and at the same time treat the situation with what is available and believe you are the person the treatment will be 100% successful. She also emphasized that because of my situation, be sure to celebrate every thing I can possibly celebrate. (Of course this is true for everyone,) How interesting I named the blog Ellen's Celebration of Life!
I have been more sad, serious and a bit depressed the past nine days than maybe anytime in my life. I leave today for La Jolla. My intention is to get rejuvenated and return home with more energy for the next chapter.
As I continue making decisions I do my best to have Gratitude for my wonderful life, full of opportunity, and the best family and friends one can have!
Tuesday, September 8, 2009
A lot to know about Satellite cells
The journey continues. Another trip to San Francisco today. Sierra and I met with a medical oncologist, Dr. Liu. He reiterated again the surgery was a success. It is good the lymph nodes were negative and that the margins were clear.
One detail that was on the pathology report was there were satellite cells, which basically is a microscopic spread of melanoma which had been removed. The concern is whether there are more microscopic cells in my body we don't know about. For this reason Dr. Liu highly recommends further treatment, either a clinical trial, or interferon for a year! We aren't sure there is a clinical trial that I am eligible for. The course of interferon is an aggressive treatment.
I knew of the possibility of needing interferon, but I was so hopeful that I wouldn't need to continue with my treatment that I really didn't think about it. Wow, this is a lot of new information to digest. More tears today. I am healing well from the surgery, better every day, but sad that it looks like the healing will be more involved than just the surgery.
As I am digesting all of this, the plan right now is that Danny and I will meet with Dr. Liu on September 25th. At that visit we will make the plan of attack. Most likely Dr. Liu will manage my case and I will be treated in Santa Rosa. This is if there is no clinical trial for me. The first month will probably be the most challenging. I hope and pray for great success. I envision that if there are any satellite cells that they will be destroyed and all that is left in my body are healthy cells which will give me a full life.
Alan's ( my son in love) parents live in St. Croix (part of the US Virgin Islands). They offered for me to go there to heal from my surgery. Honestly the travel would be too much for me, but it was an awesome offer! Nancy came up with a brilliant idea for us to go to La Jolla for a few days. We will be going there for 5 days. I am so glad we planned this trip as I am not sure if I will want to travel much during the next year. Dr. Liu already told me after my treatment, if I can, go to Maui. He has a beautiful photo of a sunset in Maui in his office. So I think I will make it a goal to feel fantastic in a year (maybe a year and half, as I read sometimes it takes up to 6 months after taking interferon to have your normal energy back) and celebrate somewhere exotic.
For now, my focus is on healing and perfect health. I am thrilled that I am healing (even if it seems slow). I have a new fight to fight and I have every intention of winning! I plan on celebrating this life for many, many years!
xoxoxo
Ellen
One detail that was on the pathology report was there were satellite cells, which basically is a microscopic spread of melanoma which had been removed. The concern is whether there are more microscopic cells in my body we don't know about. For this reason Dr. Liu highly recommends further treatment, either a clinical trial, or interferon for a year! We aren't sure there is a clinical trial that I am eligible for. The course of interferon is an aggressive treatment.
I knew of the possibility of needing interferon, but I was so hopeful that I wouldn't need to continue with my treatment that I really didn't think about it. Wow, this is a lot of new information to digest. More tears today. I am healing well from the surgery, better every day, but sad that it looks like the healing will be more involved than just the surgery.
As I am digesting all of this, the plan right now is that Danny and I will meet with Dr. Liu on September 25th. At that visit we will make the plan of attack. Most likely Dr. Liu will manage my case and I will be treated in Santa Rosa. This is if there is no clinical trial for me. The first month will probably be the most challenging. I hope and pray for great success. I envision that if there are any satellite cells that they will be destroyed and all that is left in my body are healthy cells which will give me a full life.
Alan's ( my son in love) parents live in St. Croix (part of the US Virgin Islands). They offered for me to go there to heal from my surgery. Honestly the travel would be too much for me, but it was an awesome offer! Nancy came up with a brilliant idea for us to go to La Jolla for a few days. We will be going there for 5 days. I am so glad we planned this trip as I am not sure if I will want to travel much during the next year. Dr. Liu already told me after my treatment, if I can, go to Maui. He has a beautiful photo of a sunset in Maui in his office. So I think I will make it a goal to feel fantastic in a year (maybe a year and half, as I read sometimes it takes up to 6 months after taking interferon to have your normal energy back) and celebrate somewhere exotic.
For now, my focus is on healing and perfect health. I am thrilled that I am healing (even if it seems slow). I have a new fight to fight and I have every intention of winning! I plan on celebrating this life for many, many years!
xoxoxo
Ellen
Friday, September 4, 2009
Happy Birthday!
Happy Birthday, Mom! Wishing you a wonderful day; may this next year be filled with an abundance of love, friendship, good health, strength, laughter, joy and endless blessings. I love you. See you tomorrow!
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