Hi there,
It has been a long time since I have written anything. Since I have been diagnosed with cancer my physical and emotional strength has been very unpredictable.
Before sharing my latest health news, I would like to thank and give you all an email hug. So many of you, have done so many wonderful things for me and my family. If I attempt to list all the acts of kindness we have received since I was diagnosed with cancer, I will unintentionally forget someone. Not wanting to hurt anyone’s feeling I will not even attempt to make a list. Please know that your support has been received with great appreciation, humbleness and sadness at knowing that I will never have the strength and energy to bestow such loving kindness on each of you.
In the last few months the meaning of having a chronic illness has really sunk in. Unfortunately, for me I am reminded that I have cancer with each breath I take. My energy level and ability to do things like climb stairs has not returned to my precancerous state. Something has changed in the last 6-8 weeks. I am now in constant pain. I have a lot of pain on the right side of my chest. You will recall that my tumor is located in my left lung. My ability to walk and talk (one of my favorite past times) has really decreased. My coughing has increased. Fearing and not wanting to face, that the cancer had spread I didn’t go to my oncologist until the pain, coughing and difficulty breathing were significant.
Unfortunately, the two local conchologists who have been involved with my case have moved. Thankfully, Dr. Einhorn with the IU Med center, who has been a part of diagnosing my situation, is still available. To make a long story a little shorter and not to bore you with all the medical junk, we learned that the tumor in my left lung is growing again and has closed off the opening in my bronchial tubes that was created from the treatment I received last April, May and June. I have had a 6 month remission which isn’t bad. Of course, we had hoped for a longer remission.
The good news is that they did not find cancer anywhere else in my body.
I have been afraid that maybe the cancer had spread to my ribs based on the pain I was having. This would be really unusual. When the cancer spreads it will probably go to my liver next. But it is also really unusual to have a lung cancer tumor in the fatty tissue of the leg. So, I thought my body could be acting really weird again.
The plan now is for me to take an oral chemo therapy drug called Tarceva. Tarceva usually keeps tumors from growing and in some cases will even shrink a tumor. Based on statistics this drug will probably add 9-12 months of remission to my life. Hopefully I will fall on the longer end of the Bell curve and Tarceva will work for me and it will buy me more time. Of course, there are side effects with Tarceva.
They are diarrhea and really bad skin rash. That’s better than the side effects from chemo and radiation vomiting, extreme tiredness, food tasting really weird and losing my hair again.
It is terribly hard to accept that I will never regain my strength or be as strong I was before having cancer. My stamina is not great. I am in a lot more pain than I was
this summer and early fall. I usually am nauseated and have a lot pain on the right side of my chest. The docs can’t explain the pain in my right chest. They think it might be referred pain from my left side. My coughing and breathing are not great. I will be talking and all of a sudden it is like someone took all the air away from me. My oxygen saturation levels are good enough that going on oxygen would not be helpful. It is really hard to be in constant pain. I do have pain medication but it makes me really sleepy so I take is sparingly. I have some really strong cough medicine that I take regularly and that helps some.
Jason, Alyssa, Ian and I went to Disney World during the first week of December for a week. It had been a dream of mine to take Alyssa since I was pregnant with her. Emma stayed home with my Mom. It became really evident to me that I am truly operating with limited physical abilities.
Before that at home, I often wondered if I just pushed myself a little harder would I regain some strength and be able to carry on. I realize now that this just not the case. I am never going to go back to my ‘old’
self.
Since, my time may be short or shorter than I had hoped with my children I need to set up my life so my energy can be spent with them instead of managing our household. My hope is to hire someone to help with day to day household chores in the beginning of January. Unfortunately, there isn’t a lot of extra money left after paying our monthly expenses to make this happen. I am hoping not to spend all of our retirement money so Jason will be modestly provided for when he retirees. It so humbling to share this with all of you, like most of us I want to be strong and take care of my family myself. I will be looking into the options of setting up an account for folks to contribute to. I know this sound like a sales pitch at the end. I don’t want to sound like that. I just want to let folks know what would be really helpful at this time.
My two biggest fears at this time are how much physical pain I will be in at the end. I wish we could all practice dying. You know a couple of good trail runs and then you would know what to expect and want worked well and what didn’t so when the actual event happened I would have the process down. J My other fear is watching my children and Jason cope with my illness and seeing their emotional pain when they realize I will no longer be with them. Hopefully, hopefully I won’t have to face either of these fears for a long time.
Please contact me directly if you want to (anna@dufair.org). In the past my brother has responded too many of your emails. I don’t know if I will be able to respond to everyone but I would like to hear from you. Please share with me what is going on in your life. I try not to think about having cancer all the time. Besides getting boring it is just to frightening to talk and think about cancer all the time. Talking on the phone is unpredictably difficult for me and takes a fair amount of energy. Feel free to call. I will do my best to return your call or talk when you call. I am really protecting the time with I have with my children. The best time to call is from 9:30am to 3pm during the week or after 9:00 pm at night. I get really tired at night but I will do my best.
Wishing all of you wonderful holidays and wanting to give you a big hug.
Signing off for now Anna.
