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27 Aug |
And the journey begins Edie, Treatments
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As Edie begins preparing for an autologous stem cell transplant (ASCT), and since I have mostly recovered from my recent back injury (I swam 300 meters, ran 2.5 miles, and raced my bike yesterday), for the next couple of months this blog won’t be so much about me, but instead will focus on chronicling Edie’s journey.
And so far it has been a rapid and event filled journey. Maybe even too fast [for me]. I never realized how much preparation goes in to having a transplant.
Last week there was extra blood work, a 24 hr urine collection, skeletel scan and EKG. This week she’s had a MUGA scan, pulmonary function test, and had blood drawn to check blood gases (a very painful experience she tells me), and today she has a stress test scheduled.
Next week there’s a consultation for the insertion of a Hickman Line, and if all goes as planned, the installation of that Hickman Line the following week.
After that it’s all down hill. Chemotherapy, stem cell collection, and transplant (once sufficient stem cells have been collected), followed by about a 3 week hospital recovery while her immune system rebuilds itself.
Edie’s anticipating she’ll be back home, and back to normal by early November.
This has all been happening rather quickly, and I have to admit I’m not totally on board with this decision, but she has done the research, and believes it offers the best chance for achieving a good remission, event free survival, and greater quality of life, so who am I to second guess her.
I’m just hoping everthing goes as planned!
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23 Aug |
Back pain is the worst! Day to Day Life
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Now I have pulled a muscle or two in my lower back before, which has resulted in a great deal of pain, often coupled with an inability to even move, but at least in those cases, when I curl up in the fetal position, and don’t move, the pain goes away.
But around 2 AM last night, I awoke with such extreme pain in my upper back, there was nothing I could do to alleviate it. The pain was so extreme, I couldn’t even lift my head, and for quite awhile I actually felt nauseous. Eventually I was able to stretch it out, enabling me to move, albeit very gingerly, but the pain was still there.
At that point, I was desperate, and did something I have vowed never to do, or at least only do in extreme situations. I took a SOMA.
So what caused this pain? I’m not exactly sure, because I don’t remember feeling any pain at the time, but I suspect it was when I was putting the sub woofer into the new entertainment center we had delivered yesterday. That sucker is heavy and awkward to lift.
Now I’m still in a lot of pain, and I’m resisting the need to take another SOMA, so I’ve decided not to go for my usual bike ride (I couldn’t even if I wanted to) this morning. Instead, the plan is to spend the day alternately applying heat and ice to the effected area in the hope the pain will go away by tomorrow.
If it doesn’t improve much, I may resort to taking another pill, but I’m hoping it won’t come to that. In the mean time I’ll just suffer
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19 Aug |
Not sure how to feel Cycling, Diagnosis, Edie, My MCL
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Just got my latest blood work today, and I don’t know whether to be happy or concerned.
My lymphocytes dropped from 120 thou/cumm to 93 thou/cumm, which is good, but my hemoglobin dropped to 11.6 g/dl, my platelets dropped to 185 thou/mcl and my LDH was up to 160 IU/L, which are all bad trends. (No mention of polychromasia.)
Now while my hemoglobin and platelets have been down at those levels before, this is the highest my LDH has been since it was at 153 IU/L back in January.
[BIG SIGH] I just hate this! The prospect of starting treatment any time soon weighs so heavily on my mind now, especially since Edie has decided she wants to try and go for the transplant again, I can’t seem to think rationally any more.
I’m hoping racing at Eldorado tonight will clear my mind.
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17 Aug |
What could possibly be next? General Health
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As if having mantle cell lymphoma, and everything that goes along with it, wasn’t bad enough, and as if coming to the realization the body doesn’t always respond the way the mind expects, still isn’t enough, what you soon discover as you age, is the body has a seemingly endless array of ailments it’s waiting to inflict upon you.
About a year ago, I noticed some strange lumps in the palm of my hand. Since I do a lot of bike riding, and they weren’t at all painful or bothersome, I assumed they were just callouses as a result of the pressure I exert on the handlebars when I ride.
But then about 6 months ago I realized I couldn’t extend the pinky finger on my left hand completely, I had a small lump (like an enlarged lymphnode) on the side of the finger, and the finger was looking slightly distorted and swollen.
Then about two weeks ago, I realized I couldn’t fully extend the ring finger on my left hand as well.
At this point, I was getting a little concerned, so I went to the world wide web for answers, but couldn’t find anything related to my condition. Then on last Friday’s bike ride, I noticed a cycling buddy’s pinky finger, coincidentally also on his left hand, was bent 90°, and he was unable to straighten it out.
So I asked him about it, and that led me to Dupuytren’s Contraction.
Great! Just what I need, another basically incurable disease.
There is treatment, but the current prescribed treatment involves cutting open the hand and doing something to relieve the contraction. But guess what? That surgery is very painful, and there is no guarantee the Dupuytren’s Contraction won’t return, even if the surgery is successful. [Sure sounds a lot like non hodgkins lymphoma.]
But alas, there is hope! A new procedure, consisting of a local injection of injectable collogenase into the hand, has proven to be very effective, and is much less debilitating, so even if the Dupuytren’s contraction returns you can receive another treatment.
So next Wednesday, I have an appointment with my oncologist, and hopefully I can get her to give me a referral to a hand specialist.
Fortunately this condition is not painful in the least, and it hasn’t effected my ability to ride my bike, so it’s unlikely I will seek treatment just yet, but I do want to leave all my options open.