Many of you may remember that Phil has been dealing with some intense pain symptoms since Easter that have eluded any firm diagnosis. He has seen a neurologist, 2 rheumatologist's, an endocrinologist and a family physician. Several weeks ago he began to develop even more concerning and serious symptoms which sent him to an oncologist and five days ago he had two large lymph nodes removed from his around his left clavicular area. While he was in the recovery room I was told by his surgeon that "it is definitely lymphoma" that we were dealing with.
We are now sitting in the car at an intersection, waiting for the light to change, both of us staring off into space. We've just come from our oncologist's office after hearing the full extent of the lymph node biopsy results. It is definitely lymphoma, it is a rare form and it is aggressive. That helps explain the systemic smptoms he has been experiencing -- weight loss, night sweats, profound fatigue and even more intense pain.
Phil has T cell Lymphoblastic Lymphoma. It accounts for about 2% of Non-Hodgkins Lymphoma diagnosed per year. So now that we knew what type it was the next step was to figure out what stage the disease was in. At that oncology appointment with Dr. Kossman (an amazing God-given blessing to us) Phil chose to have a bone marrow biopsy to begin the staging process. It was moderately painful but he was so ready to get the answers we need to begin treating this thing. He has been suffering for so long! As he says, "it has been kicking my ass for so long, I'm ready to kick it's ass back!"
The next morning, yesterday, he had a neck, chest and pelvis CT scan to see how many lymph nodes are involved and where they are. Determining this is also part of staging the disease and guides the chemotherapy. It involves how many are above and below the diaphragm and whether or not his thymus gland is involved which will mean he also will need radiation therapy. Later on, probably next week, he will need an inpatient spinal tap to finish his staging. About 10% of the time there is CNS (central nervous system) involvement. He will be prophylactically treated with chemotherapy at the time of diagnostic testing as well.
We have very briefly discussed the chemotherapy regimen ahead of us and it is either an every week or every 3 week regimen for 6 months. He will need to be in the hospital for 3-4 days for each cycle and there is a combination of 4-8 drugs involved. Needless to say it is incredibly daunting, he will be out of work and very sick.
We follow up with Dr. Kossman later today for the results of the staging studies and the next chapter in this horrible drama.
We are just beginning to grasp all this and time is doing that thing where it moves along without you while decisions are made rapidly and everything you thought mattered just falls away. We are feeling the love and prayers of all our friends and family pouring in and somehow are still able to eek out 4-5 hours of sleep. God is providing mercies and covering the details every time we turn around. Why this has been visited upon us we don't understand but we do know that He is good, all the time.
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