I am relieved to say that the bag of lettuce mentioned in my previous blog post was not on the recall list. I checked with the store and they had already pulled off the recalled produce before I purchased it and I double checked the UPC code. I still threw the bag of lettuce in the trash and my family is staying away from salads for awhile. They closed down a distribution plant that is about 15 miles from us due to a voluntary recall. The whole listeria outbreak is under investigation. I can't wait to plant my garden in the spring, at least we know where our produce is coming from. My husband is wanting to make the garden even bigger this year. I say let's do it.
January was a long month and ended with some unusually warm days. We managed to get outside last Saturday and walk. It felt so good to be outside. I can tell I am out of shape as my stamina is poor. We should have been walking at the university this winter, but we have gotten into a bad habit of hibernating. It was three years ago that we did the half marathon in San Antonio, Texas sponsored by LLS. I still am amazed by my medal. The time has flown by quickly.
The LLS sent us some info on an out of state conference in March. It is not far from us, so we are hoping to attend. We look forward to hearing what is new with lymphoma. I listened to a conference given by the chief medical officer of the American Cancer Society. He made me think about the care my husband had received at a major cancer center.
I am still angered by some remarks that were made to my husband at the cancer center. It has made it difficult for him to decide what he should do about follow up care. Between the patient advocate that told him in 2013 it was no concern of center what happened to him and the doctor that told him he didn't care what happens to his patients, my husband and I are still are in disbelief. Imagine people telling you that they just don't care after you just went through hell to try and survive cancer. He did see a new doctor, but has had no follow up since. The new doctor was respectful, but it is hard to get an appointment with him and suddenly a year and half is upon us.. We think it is just a bad dream. Still pondering what the heck we lived through.
The communication at the center still reminds me of the game telephone. The game starts with you whispering something in some one's ear and then it continues to be told to others and when it gets back to you it is so misunderstood and it is so unbelievably different than what you actually said. I guess we will never understand what the heck was going on. All we know is that we are very disappointed in the patient advocacy department and the social work department. We have learned that we will always make sure that it is perfectly understood and in writing that we can speak for each other. It is the patient's right to designate a spouse to relay information to a medical team. The medical team should respect the patient's spouse and never shame or disrespect them in front of the patient. This is still a very raw and emotional memory for my husband and I. Now that we both feel better and the shock of the whole journey has settled down, we are both angry about what we went through and hope that no other patients were subjected to this kind of treatment. A cancer patient has many psycho social things to deal with and so does the family. It is not a game of shaming them or discriminating against them. It is about letting them express their fears and helping them. I guess people don't get the fear, anger, and anxiety of fighting cancer until it personally happens to them.
I pray that the decisions my husband makes for his future care will be exceptional and the love of god will be with us. No one is perfect and everyone has the right to be heard. We are grateful to the health care professionals who did help us and not pass judgment against us. The past is over but not forgotten. We lift our selves up and we learn from our mistakes and move forward to be better and stronger people.
Life is beautiful !
Elizabeth:)
Friday, February 5, 2016
Thursday, January 28, 2016
LLS Awards
January is almost over and thank goodness. There is a saying that if you can survive January in the north then your seasonal depression battle is almost over. We were so spoiled by the mild November and December weather.that January has seemed brutal. We are however very blessed that the major blizzard went around us. I am praying for those who are buried in the massive snowfall. The sun is out here today and it has lessened my sullen mood. I am actually going to go out today and enjoy the sun.
Yesterday was one of those days that you get up and suddenly you wish you had slept through it. I wanted to cry last night but I kept telling myself to suck it up and reminded myself that we cannot change the past. Today is a better day and I am going to enjoy it.
I have had three meetings this month cancelled due to the bad weather and yesterday finally had some friends over. It was nice to fill the house with some laughter. However my friends noted that I had a bag of lettuce in the refrigerator that had been recalled due to a listeria outbreak. I did not know and I would have continued to eat it. I felt ill immediately and told my husband who has also been eating it. We are now worried along with some other friends who had bought and ate the lettuce also. On-line they had instructions as what to watch for. I saw that the incubation period could be a week or 21 days before symptoms occurred and up to 70 days. I think my mind was playing tricks on me as I felt ill last night. I called my dad to alert him of the recall and he was trying to reassure me not to worry. Okay Dad, I am going to listen to you and keep enjoying my healthy days. My friend tried to make me laugh, as she said we were playing Russian roulette with a bag of lettuce. That is not my idea of fun, but I realize my friend was trying to make me laugh as I had a look of panic on my face.
I have to accept that there is nothing we can do except pray and keep on living each day to the fullest. If we start having any symptoms we will be at doctors office pronto.
On a lighter note my husband and I went to an award dinner last night for LLS. They had a celebration for some of the top fund raisers for 2015. My husband and I were honored for our continual support of LLS. We surpassed our goal and was in the Bright Lights club. It was a nice dinner and of course it is always nice to be among other people who are struggling with the whole cancer journey. The highlight of the evening were of course children. One boy was honored as a Leukemia survivor and he was celebrating a one year anniversary. The other story of the evening was a little girl who had raised nineteen hundred dollars by herself for LLS. She had sold candy and was proud to say that she did it in honor of her Nana that has myeloma. She is an inspiration for all of us.
As we departed last evening from the awards dinner, we were saddened to hear that they will not be having the Leukemia and Lymphoma conference in the spring. It was hosted by LLS for patients and their families. We were told that the person who hosted this event lost the position due to cuts and consolidation of positions. My husband and I were very sad to hear this. We had attended the conference many times and it had helped us connect with other patients, learn about new medications, and all the research happening with blood cancers. It also helped us heal and have our fears validated by people who understood us. . We feel lost now and I am sure many others feel the same.
My last rant today is that darn cancer has worked its' way into my life again. I was saddened yesterday to find out that my childhood friend has breast cancer. She and I have been writing to each other for the last 44 years. Ironically she lives in northern Texas. We were separated when her father was transferred to another state for work. We never let that stop us from continuing a friendship based on letters and now an Internet connection. I still have a box filled with letters from her. We have seen each other a couple of times over the years, but our last encounter in person was about 29 years ago. My prayers are being sent to her and her family. God bless all cancer patients !
Seize the day and live it to the fullest and I hope wherever you are there is plenty of sunshine.
Life is beautiful !!
Elizabeth:)
Yesterday was one of those days that you get up and suddenly you wish you had slept through it. I wanted to cry last night but I kept telling myself to suck it up and reminded myself that we cannot change the past. Today is a better day and I am going to enjoy it.
I have had three meetings this month cancelled due to the bad weather and yesterday finally had some friends over. It was nice to fill the house with some laughter. However my friends noted that I had a bag of lettuce in the refrigerator that had been recalled due to a listeria outbreak. I did not know and I would have continued to eat it. I felt ill immediately and told my husband who has also been eating it. We are now worried along with some other friends who had bought and ate the lettuce also. On-line they had instructions as what to watch for. I saw that the incubation period could be a week or 21 days before symptoms occurred and up to 70 days. I think my mind was playing tricks on me as I felt ill last night. I called my dad to alert him of the recall and he was trying to reassure me not to worry. Okay Dad, I am going to listen to you and keep enjoying my healthy days. My friend tried to make me laugh, as she said we were playing Russian roulette with a bag of lettuce. That is not my idea of fun, but I realize my friend was trying to make me laugh as I had a look of panic on my face.
I have to accept that there is nothing we can do except pray and keep on living each day to the fullest. If we start having any symptoms we will be at doctors office pronto.
On a lighter note my husband and I went to an award dinner last night for LLS. They had a celebration for some of the top fund raisers for 2015. My husband and I were honored for our continual support of LLS. We surpassed our goal and was in the Bright Lights club. It was a nice dinner and of course it is always nice to be among other people who are struggling with the whole cancer journey. The highlight of the evening were of course children. One boy was honored as a Leukemia survivor and he was celebrating a one year anniversary. The other story of the evening was a little girl who had raised nineteen hundred dollars by herself for LLS. She had sold candy and was proud to say that she did it in honor of her Nana that has myeloma. She is an inspiration for all of us.
As we departed last evening from the awards dinner, we were saddened to hear that they will not be having the Leukemia and Lymphoma conference in the spring. It was hosted by LLS for patients and their families. We were told that the person who hosted this event lost the position due to cuts and consolidation of positions. My husband and I were very sad to hear this. We had attended the conference many times and it had helped us connect with other patients, learn about new medications, and all the research happening with blood cancers. It also helped us heal and have our fears validated by people who understood us. . We feel lost now and I am sure many others feel the same.
My last rant today is that darn cancer has worked its' way into my life again. I was saddened yesterday to find out that my childhood friend has breast cancer. She and I have been writing to each other for the last 44 years. Ironically she lives in northern Texas. We were separated when her father was transferred to another state for work. We never let that stop us from continuing a friendship based on letters and now an Internet connection. I still have a box filled with letters from her. We have seen each other a couple of times over the years, but our last encounter in person was about 29 years ago. My prayers are being sent to her and her family. God bless all cancer patients !
Seize the day and live it to the fullest and I hope wherever you are there is plenty of sunshine.
Life is beautiful !!
Elizabeth:)
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