Thursday, April 30, 2009
April 30th
Robert did come home yesterday and is feeling better today. Our lives have changed dramatically since April the 8th and yet is as if we have been waiting for so long to receive the answers that will ultimately dictate future treatments. The diagnosis does not seem to be the most important news anymore - it is the treatments and effectiveness of treatments that we will have to focus on. The days are filled with a multitude of emotions as we wait for final pathology results from both the chest and the brain. We came home from the hospital ready to rest and prepare for the fight ahead. It is with the words of encouragement that you have given that we will stay positive in our ability to fight. It is in the love that you give that we will find the power to believe in ourselves and in the doctors to hold on to hope and never give up. It is in the acts of kindness that we find peace and that we are surrounded by 'good'. There are to many people to thank. I want so desperately to talk to each and every person but I can not find the time. Please know that we are thankful and do not take you for granted.
Wednesday, April 29, 2009
April 29th
The brain biopsy went well yesterday and the results will take 5-7 working days. Yesterday was a long day as we arrived at the hospital at 6am for an MRI and the biopsy didn't begin until 3pm. Robert spent the night in the NCCU -Neuro Critical Care Unit- and may possible get to come home today. I am leaving for the hospital to try and capture and release him. If he does not come home I will spend the night with him as he will be moved to a recovery floor. We thank everyone again for your wonder words good wishes. Thanks to all!
Monday, April 27, 2009
April 27th
Things have been changing every other day and it is difficult to keep everyone informed. I will try to update you without including the details of every possible scenario of what could be... The final pathology from the chest mass is not done and we are still awaiting results. Robert will have a brain biopsy tomorrow and the results should give us a better idea of the direction that treatments will take. We believe that the doctors are working diligently and with the the greatest desire to help. They are great and we are grateful to have them on our team. Please pray for them as they work to take care of us. Please pray for Robert as he undergoes yet another test and future treatments. We are blessed to have all of you on our team as well and know that the positive thoughts are making a difference in our lives. I will carry all of the love and support with us as we continue to travel on this journey and it will help us to keep moving forward with hope and the realization that we are not alone. Love to all.
Friday, April 24, 2009
April 24th
Today Robert will be admitted into the hospital today. His medical situation is more complicated then ever before and we are desperately seeking answers so that treatments can begin. Forgive me for not being able to write about all of the details associated with this journey, but I am exhausted both physically and emotionally and I am unable to share the details right now. We are still waiting the final biopsy results from the mass in the lung. Know that we are going into the hospital for testing, in the hopes of finding more answers. Robert should be in the hospital until Thur. Most test will be non-invasive and have no pain associated with them. On Tuesday - Robert will have a brain biopsy. This is not a biopsy of the tumor already seen on the MRI scans, but in another area of the brain where there is question of something else happening. We are living a nightmare as Robert's gets sicker and there is no current treatment. Thank you to everyone for your support and love. Thank you.
Monday, April 20, 2009
April 20th
Malignant! That is what they tell us. What type of cancer? We will have to wait. The words we anticipated after a week of test that were being scheduled rapidly and with urgency. There was the intense need to find out what this mass was in Robert's chest. Still - barely enough time has passed since we first heard the words - "We found something" - "A mass in your chest" and we are still dealing with the shock of the possibility of a secondary diagnosis of cancer, much less the reality that the mass is malignant. The recurrence of brain tumors was not shocking. The mass in the chest was shocking. Both at the same time is shocking. Everything just got ten times more complicated.
It is as if Robert's body is fighting against him. More cancer, cognitive functioning that is disrupted from brain tumors, and constant fatigue even before new treatments have begun. He remains strong, but how much can one person take? He tries to stay focused on what he has to do to fight the cancers. We stay committed to lift each others spirits when necessary and to refocus each other when times seem overwhelming.
Oct. 15, 2007 - it was if someone stuck a sword through my chest with the diagnosis of a glioblastoma multiforme grade IV. I pulled the sword out and over time the puncture began to heal. April 8, 2009 - is was if someone stuck a knife in my heart with the official diagnosis of a recurrence of brain tumors. There was no time to pull the knife out before the news of a mass in the chest was presented. The knife has been pulled out, but I am not sure if these wounds will ever heal. At he very minimum, the scares will be felt for a lifetime. My heart aches for all of us. Our family had already changed after the initial diagnosis, but this new stretch of the journey may have the greatest impact on our family. I hope that we can find the lesson to be learned in this deep pain. I hope that we can stay open to the belief that everything happens for a reason and if we are open to the entire experience - we will all be stronger for it.
We are sad. The kind of sad that no one would ever wish to experience. The kind of sad that hurts. The kind of sad that can make you feel physically sick. The kind of sad that changes your perspective of everything - yourself, your relationships to others, your purpose on this earth , and the importance of finding the truly important things in life. The news is devastating and it is as if the 'bump in the road' just became a mountain. We are ready to climb the mountain and will do whatever we have to do, we will go wherever we have to go, and will work with who ever we need too. We are together and will fight together with all of the support that is offered.
There are those that support us and we are incredible grateful to so many people. We are truly living day by day right now and are thankful to those who take care of our boys without any prior notice. We are thankful to those who take our boys to try and keep their schedules as normal as possible. We are thankful to those who look after our boys to give us time to do what needs to be done. They are taking care of our most precious gifts. We are thankful to those who send us messages of hope and words of encouragement. We are thankful to those who send us positive thoughts and prayers. They are keeping us moving forward. We are thankful to the friends who support us in our efforts to raise awareness and fundraising efforts. They are making a difference! We are thankful for the medical teams who have and will work to determine the best treatment options. They give us hope. Thank you!
It is as if Robert's body is fighting against him. More cancer, cognitive functioning that is disrupted from brain tumors, and constant fatigue even before new treatments have begun. He remains strong, but how much can one person take? He tries to stay focused on what he has to do to fight the cancers. We stay committed to lift each others spirits when necessary and to refocus each other when times seem overwhelming.
Oct. 15, 2007 - it was if someone stuck a sword through my chest with the diagnosis of a glioblastoma multiforme grade IV. I pulled the sword out and over time the puncture began to heal. April 8, 2009 - is was if someone stuck a knife in my heart with the official diagnosis of a recurrence of brain tumors. There was no time to pull the knife out before the news of a mass in the chest was presented. The knife has been pulled out, but I am not sure if these wounds will ever heal. At he very minimum, the scares will be felt for a lifetime. My heart aches for all of us. Our family had already changed after the initial diagnosis, but this new stretch of the journey may have the greatest impact on our family. I hope that we can find the lesson to be learned in this deep pain. I hope that we can stay open to the belief that everything happens for a reason and if we are open to the entire experience - we will all be stronger for it.
We are sad. The kind of sad that no one would ever wish to experience. The kind of sad that hurts. The kind of sad that can make you feel physically sick. The kind of sad that changes your perspective of everything - yourself, your relationships to others, your purpose on this earth , and the importance of finding the truly important things in life. The news is devastating and it is as if the 'bump in the road' just became a mountain. We are ready to climb the mountain and will do whatever we have to do, we will go wherever we have to go, and will work with who ever we need too. We are together and will fight together with all of the support that is offered.
There are those that support us and we are incredible grateful to so many people. We are truly living day by day right now and are thankful to those who take care of our boys without any prior notice. We are thankful to those who take our boys to try and keep their schedules as normal as possible. We are thankful to those who look after our boys to give us time to do what needs to be done. They are taking care of our most precious gifts. We are thankful to those who send us messages of hope and words of encouragement. We are thankful to those who send us positive thoughts and prayers. They are keeping us moving forward. We are thankful to the friends who support us in our efforts to raise awareness and fundraising efforts. They are making a difference! We are thankful for the medical teams who have and will work to determine the best treatment options. They give us hope. Thank you!
Tuesday, April 14, 2009
April 14th
It is Tuesday and so much has happened since our last post. Suffice it to say Robert has been going through multiple test to rule out the possibility that the mass in his chest is another type of cancer. Blood work, ultra-sounds, biopsy, and PET Scan. Everything is being scheduled quickly and appointments are being shuffled back and forth to fit them all in. Our oncologist recognizes the emotional distress of not knowing and works diligently to get us seen.
We will meet with here tomorrow to discuss the newest test results -if available- and to discuss the Brain Tumor Boards recommendations related to the latest brain scans.
Robert is exhausted and yet he still holds a sense of humor with the doctors and nurses. We will wait for the good results that must come. If this is a test - then we will pass. We will do what we need to do to be informed and take whatever action we need to take to be well.
The positive thoughts being shared with us - keep us well.
We will meet with here tomorrow to discuss the newest test results -if available- and to discuss the Brain Tumor Boards recommendations related to the latest brain scans.
Robert is exhausted and yet he still holds a sense of humor with the doctors and nurses. We will wait for the good results that must come. If this is a test - then we will pass. We will do what we need to do to be informed and take whatever action we need to take to be well.
The positive thoughts being shared with us - keep us well.
Thursday, April 9, 2009
April 9th
April 8th came and the news received from the MRI was unwelcome. Where there were two spots - now there are three. The official term - reoccurrence. Then the discussion of treatment options. Our oncologist is knowledgeable and shares multiple treatment options for us to consider. Options include surgery, different chemo drugs, clinical trials. The information is overwhelming. We will take one step at a time and trust in the professionals who care for us with all of the compassion of a friend. We will trust in ourselves to do what we feel is best and we will trust in the powers that guide us to keep moving forward.
We met with the surgeon today and he is first- sincere in his promise to always hold 'hope'. He will review Robert's scans with the Tumor Board on Monday to confirm that all other team members agree with him and the oncologist that the benefits of surgery would outweigh the risks. He will try to reach all spots and remove as much as he can without harming any good brain tissue. There are two spots that he feels confident that he can reach. The third spot is questionable and he will have to wait and see. We will wait to hear from them and make decisions from there.
We received a call from the oncologist this afternoon and they have found a mass in Robert's chest cavity. They do not know what it is and it will have to be biopsied. We hope to have it scheduled by early next week and are very frightened by this finding. They believe that this mass is unrelated to the brain cancer and are shocked by the results of the CT Scan.
This is all difficult to process. First a diagnosis of brain cancer, then a possible diagnosis of melanoma, and now a mass in his chest. Really! I would be angry if I knew who to be angry with. Robert and I are taking care of each other and we will fight the current and any additional diagnosis we are confronted with. We hope for good test results and for good treatment options when needed and ultimately a cure. We hope for the strength to handle any news that is received and the ability to stay happy and strong in spite of it. The support from those that we love is amazing and so appreciated.
We met with the surgeon today and he is first- sincere in his promise to always hold 'hope'. He will review Robert's scans with the Tumor Board on Monday to confirm that all other team members agree with him and the oncologist that the benefits of surgery would outweigh the risks. He will try to reach all spots and remove as much as he can without harming any good brain tissue. There are two spots that he feels confident that he can reach. The third spot is questionable and he will have to wait and see. We will wait to hear from them and make decisions from there.
We received a call from the oncologist this afternoon and they have found a mass in Robert's chest cavity. They do not know what it is and it will have to be biopsied. We hope to have it scheduled by early next week and are very frightened by this finding. They believe that this mass is unrelated to the brain cancer and are shocked by the results of the CT Scan.
This is all difficult to process. First a diagnosis of brain cancer, then a possible diagnosis of melanoma, and now a mass in his chest. Really! I would be angry if I knew who to be angry with. Robert and I are taking care of each other and we will fight the current and any additional diagnosis we are confronted with. We hope for good test results and for good treatment options when needed and ultimately a cure. We hope for the strength to handle any news that is received and the ability to stay happy and strong in spite of it. The support from those that we love is amazing and so appreciated.
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