Waiting, waiting and more waiting. We just want the definitive diagnosis so we can get the treatment started. Everything is leaning towards a lymphoma, most likely Mantle Cell Lymphoma. Not a good one.
Friday was the bone marrow biopsy and it was quite painful for him. More bloodwork, a CT scan, 24 hour urine. He has been through it. Now Monday it is and Endoscopy and Colonoscopy. I am taking off work so I can drive him back from the hospital.
I went away for the weekend last weekend with a group of women from my book club to Smith Mountain Lake. I did not want to go.. at all. Gary insisted that I do. It was nice, but I never could completely relax and was always thinking about him. I came home on Sunday morning and he hadn't showered the whole weekend and never combed his hair. He was a walking zombie. I hate that I went away. He cried in my arms and said 'I wanted to grow old with you!'
He and I are telling our son and his wife tonight.
I hate this.
Wednesday, September 30, 2009
Wednesday, September 23, 2009
Inconclusive results
No bone marrow biopsy last Friday as the doctor wanted more bloodwork done to help determine if it really was CLL. After waiting several days, we finally received the call from the doctor yesterday (Tuesday) stating that they could not determine what it is, whether a lymphoma or a leukemia. He will have that on Friday.
Until that phone call came last night, my stomach was tied up in knots... I even felt sick to my stomach. I wish we knew so we could get the treatment started. This limbo is driving me crazy.
Until that phone call came last night, my stomach was tied up in knots... I even felt sick to my stomach. I wish we knew so we could get the treatment started. This limbo is driving me crazy.
Sunday, September 20, 2009
Bandaid
Yesterday was a day of mixed emotions. He cried in my arms in the middle of the day and I held him and let him cry... I cried too. Life is just so unfair.
We are staying busy. Last night our friends invited us over to their house for dinner with their out of town Australian visitors and our friend's family. It was wonderful and for 4 hours our sadness was temporarily replaced with fun and laughter. It was greatly needed! I kept checking out Gary and he was having a good time.
Today we are going with the same group and taking a bus to the vineyards to a couple of wineries. That should be a great time. Being with friends is a huge bandaid.
We are staying busy. Last night our friends invited us over to their house for dinner with their out of town Australian visitors and our friend's family. It was wonderful and for 4 hours our sadness was temporarily replaced with fun and laughter. It was greatly needed! I kept checking out Gary and he was having a good time.
Today we are going with the same group and taking a bus to the vineyards to a couple of wineries. That should be a great time. Being with friends is a huge bandaid.
Saturday, September 19, 2009
Day one
Or is it day two or which day is it? How do I cope with so much grief, how can I support my husband when I am grieving so much for him? Do I let him see my pain? Do I push that aside and show him I am strong?
He has Parkinsons and was diagnosed 3 years ago and if that is not enough, the doctor now thinks he has CLL, Chronic Lymphocytic Leukemia. His blood levels are way off. He was to go in yesterday for a bone marrow, but the night before his doctor called the house, I answered. She said, "I think we will postpone the bone marrow for a while", he needs to come in for more blood work, his last bloodwork is very suspicious for CLL." I calmly said that she needed to call him at work and gave her his number. After I hung up, I screamed and wailed... no it cannot be!
She should not have told me this presumptive diagnosis, where is patient confidentiality? But she did and I need to move on from that. I phoned my husband and asked if the doctor called. He said that he heard from her and that he should come in Friday for more bloodwork. She would have a copy of his bloodwork waiting for him from this past Tuesday. He remained pretty calm about it all on Thursday night, stating that it probably was from all of his meds he is on that is causing such a flucuation.
We went in for his bloodwork on Friday morning. He saw the paperwork and talked to the doctor. We both saw from the look on her face that she was pretty sure that is what it was. She said that the bone marrow and CT scan will help in staging his illness. We left the hospital and Gary was despondant... he said from reading the lab results (he is a doctor), he is pretty sure that he does have CLL. He is quiet, withdrawn and emotional all rolled into one.
He will probably get the definitive diagnosis on Monday. We are not just sitting and waiting for this, I am encouraging him to be active. We went to the movies yesterday and saw Julie and Julia and it was great and lighthearted. I had a lump in my throat the entire time the movie was playing and cried through a good portion of it. I know he did not see me, at least I hope that he did not.
Tonight we go to a friend's house for dinner and tomorrow on a wine tour. He will not say anything to anyone... and neither will I. We will make the best we can of this situation this weekend. A day at a time is all we can do.
He has Parkinsons and was diagnosed 3 years ago and if that is not enough, the doctor now thinks he has CLL, Chronic Lymphocytic Leukemia. His blood levels are way off. He was to go in yesterday for a bone marrow, but the night before his doctor called the house, I answered. She said, "I think we will postpone the bone marrow for a while", he needs to come in for more blood work, his last bloodwork is very suspicious for CLL." I calmly said that she needed to call him at work and gave her his number. After I hung up, I screamed and wailed... no it cannot be!
She should not have told me this presumptive diagnosis, where is patient confidentiality? But she did and I need to move on from that. I phoned my husband and asked if the doctor called. He said that he heard from her and that he should come in Friday for more bloodwork. She would have a copy of his bloodwork waiting for him from this past Tuesday. He remained pretty calm about it all on Thursday night, stating that it probably was from all of his meds he is on that is causing such a flucuation.
We went in for his bloodwork on Friday morning. He saw the paperwork and talked to the doctor. We both saw from the look on her face that she was pretty sure that is what it was. She said that the bone marrow and CT scan will help in staging his illness. We left the hospital and Gary was despondant... he said from reading the lab results (he is a doctor), he is pretty sure that he does have CLL. He is quiet, withdrawn and emotional all rolled into one.
He will probably get the definitive diagnosis on Monday. We are not just sitting and waiting for this, I am encouraging him to be active. We went to the movies yesterday and saw Julie and Julia and it was great and lighthearted. I had a lump in my throat the entire time the movie was playing and cried through a good portion of it. I know he did not see me, at least I hope that he did not.
Tonight we go to a friend's house for dinner and tomorrow on a wine tour. He will not say anything to anyone... and neither will I. We will make the best we can of this situation this weekend. A day at a time is all we can do.
Subscribe to:
Posts (Atom)