Day to Day

Let me try this again! Michael didn't want anything posted in the group about how he has been feeling until after his party, he wanted to have fun and enjoy the day with out a cloud hanging over his head or people "worrying" about him and he didn't want anyone not to come because of "cancer". Though yesterday was a day of recovery for him as the days after any big event or activity is, he was still very happy with how his party went, despite how he felt he said several times "I have a lot of good people in my life" , "I had a lot of fun" and "Thank you for doing that for me". For that I want to thank everyone who took time out to come and celebrate and laugh with us, it means more to him then just a ball game or birthday party!  He has been struggling emotionally and physically the last few weeks. He has been processing and coming to terms with his limitation both physically and mentally, he has kind or withdrew in order to process this new stage in his our life. The appointment with the quaky neurologist really knocked him down, but we do have a new appointment, they called this morning with a new doctor who actually has requested we bring the mri with us, so that is a positive sign, the other doctor didn't even look at it! Friday I left work a little early in order to take him in to Dr. Hadley's office to get an iv of nausea meds and nerve meds, as we know that our mind can greatly effect our body and we have been unsure of what has been causing his sickness the last few weeks. He has not been able to eat with out getting sick, he has been drinking a lot of Gatorade and eating a lot of crackers. He has been dealing with an immense amount of nausea and upset stomach, he has been dizzy quite often, which could be from not being able to eat much, his legs have been weakening even though he is doing well at staying as active as he can. When we were in wal-mart on Thursday buying the food for the party his knees buckled and the only that saved him from hitting the floor was the cart. On Saturday he refused to eat anything until the party as he was afraid he would get sick or start feeling bad and be unable to enjoy himself and he wanted to enjoy the day to fullest. He did eat at the party, he snacked and ate 3 wings, he didn't try any of his cake until Sunday afternoon. Because he waiting to eat until the party he also had to wait until the party to take his chemo pills. This made him a little anxious as he does not know from one day to the next how his body is going to react to them, there are days that they don't bother him at all and days that he is in bed all day. This is usually his good week, the last week of the cycle when he is feeling his best before it all starts over again, he has iv chemo Friday and then will spend the next week taking his biggest doses of chemo pills. This sends him in to about 20 days of feeling really bad, then the last 8 days he is usually adjusted and feeling good before starting again, he lives for that one week, but since I am writing this you know I am home and he this is not the case, he is feeling very bad, dizzy, weak and sick to his stomach something awful, we know it will pass but it is frustrating as hell! It has been many days recently that he has been in bed a lot or on the couch laying down and watching tv. The biggest frustration for him however over the last few weeks has been his feet, they are numb all the time and hurt, he has been having trouble driving because he can not feel pedals and even walking a lot. This I feel is adding to his other symptoms because he is not able to be as active as he has been and I believe this is effecting his over all health. The frustrating thing for me in all of this is it is not the "cancer" per say making him have all these frustrating problems is the poison, the medications that he takes to keep the cancer from killing him. Until the last few weeks the lowered doses of chemo he has been on since his thanksgiving hospitalization have been doing better for him. His blood counts are still responding well to the new doses which is a blessing. His body was doing a lot better also until recently. His body is tired and though he is doing better in many aspects with the new chemo doses which we are so thankful for, his body is nonetheless tired and tired of being abused by all these drugs. We are confident there will be a day when many of problems he faces day to day will be a distant memory and we know that the realization that some of them will be a constant reminder of what he has been though is. We were told many months ago that the problems with his legs and feet and even hands (though his hands luckily are not giving him trouble thankfully) were a possibility and irreversible we hoped that he would have to deal with it. Our options are to stop chemo to avoid further damage to his legs and feet or continue and possibly have worse effects. These effects are life long effects, not just "while in treatment" effects. We have talked about these options for the last few weeks and HE has decided, because ultimately these are his decisions, I am just a support, to continue with treatment. If we are to stop treatment at this time we don't know what may happen, his cancer may stay inactive or it may not, we do know the chances of it becoming active and even growing or spreading are much greater if he don't finish treatment. He feels and I agree that quitting is not an option, he is responding well to treatment, the treatment it's self is reeking havoc on his body, but it appears to be doing it's job on the cancer. We are still unsure if the issues with his memory and cognitive abilities are long term or short term and hope to get answers on that soon. His fear is that he will not be able to work again and he worries that kids and I will suffer, we will not, we are doing well and will continue to do well. He also knows that if he is not here we will be doing worse in many ways. He is going to be here and we are going to get through each obstacle that is put in front of us. He is good at pretending everything is fine even when it is not and those of us who are very close to him know this, @janet and I are good at calling his bullshit and will continue to do so and make sure he is taken care of and everyone else can help by not doing so and letting him feel normal and seen as more than cancer and in turn helping him overcome these obstacles. Why is this update important if I don't want you to do anything, the answer is because this our journey and we want the truth of this disease out there, it may help someone else or it may help awareness. The life of a cancer patient and the people who love them is much more complicated then meets the eye and takes a lot more planning, a party is not just a party, a symptom is not just a symptom, normal is different every day, but surviving is the goal for each person I know that is having this same struggle. I have a friend and her daughter that I love dearly and I know they are struggling with some of these same issues, and I know that they look at Michael and wonder how he looks so good and how he is doing so well, I want you know my friend you are not alone, what you are going through is normal and he goes through it as well. Anyone else who may read this, you are not alone! Life is hard, but not impossible, don't give up! You are either fighting or your dying! Love all of you, you each are a part of this journey and each of you make it possible!!!