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Surreal


Trebs

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Hospital stay so far has been a mixed bag. Monday was pretty much a wasted day. I got here at 10AM, and other than small things like changing the dressing on my PICC line and drawing blood for testing, nothing happened until I started on Rituxan at 6PM. As with the last two time, a little over an hour in, I started getting chills/rigor. At least this time, it was much milder - still scary at the time, still chattered teeth a bit but was handled a lot faster and I had more control over my body, not jerking around uncontrollably as I did previous times, just trying to get warmer. After a bit, they restarted the Rituxan as I had normalized my temp, but then around 9PM, when they standardly checked my blood pressure, it was really low at 88/46 so they stopped the Rituxan. I got my ambien for the night and fell asleep at 10PM - kinda wimpering into my pillow as I still had body aches and light pains.

 

I woke up about 1:30AM and felt FANTASTIC - no body ache, felt VERY rested and just - felt good. My mind was totally spinning around awake, so I sat up, turned on the news and just caught up on email and news. Heh - I tried to get a nap about 3:30AM, but after an hour of not falling asleep, just stayed up - I take enough cat naps during the day that I wasn't too concerned over the little (but good) sleep I got.

 

Dr Spears came in around 9 and detailed out the day - they would restart the Rituxan, but just giving me the part I hadn't finished the night before - that started at noon and went until about 7PM. They then finally started on the second chemo drug, Cytoxan, which is another one that I had taken before. Cytoxan will be given to me every 12 hours for a total of 6 doses so three days total. So they started that at 10PM and finished at 1AM, and I'll get another Cytoxan this morning around 10. I had no reaction the first time I got Cytoxan back in early Sept, and again last night, no side effects - WOOT!

 

Stanford also finally called yesterday and scheduled me - the first visit is just a consultation visit. I'll go at 11:30 on Friday, Nov 7 and first meet with a social worker for an hour who goes over the whole transplant concepts and stuff, then 1/2 hour break then meet my doctor and case manager at 1PM for between 1.5 to 2.5 hours. Dan and I are thinking we'll drive down in the morning, get a hotel room for that night after and visit with Manuel while we're down there. Plus - we will avoid San Jose traffic by coming back on Saturday morning (and probably stop by and visit with my mom for a bit on the trip back). The nice thing is, my next round of chemo starts the following Monday, Nov 10, so I should be totally over any effects of this round and up for travelling on the 7th - I was really happy when they had that date available for this consult. Now, I don't know when they'll actually pull my bone marrow, but I can wait until the 7th to find out.

 

So - overall, things are good - but getting back to the blog title, also a bit surreal. With less than two weeks left, it feels SO weird watching tons of political news and commercials and not being in my office WORKING on it. I mean, I have helped in little ways here and there, answering emails and phone calls from my office. One thing that will be VERY weird - normally Chris who is also in our Sacramento office and I go down to the Los Angeles office for the last 4 days (Sat through Tues) to set up and do a legal watch program. We give out a toll-free number to volunteers and voters and have 10 phones with volunteers taking calls all day - a lot of them are just "where do I vote" so the volunteers look up polling places. But we also get the calls of "They have 6 machines but only one is working" which we pass to our team of lawyers who call it in to the County Registrars to try to quickly solve (and in many cases, the county does - with roving trucks with extra machines that dispatch to these troubled precincts). Bottom line - it is a very enriching experience for us - being able to help voters exercise their rights. But this year - I won't be there. Chris, the volunteers, the legal team will be there, but I'll be at home in Sacramento. Just... one more little sign that my life has changed. But overall, I'm getting through it - I know this is just a short-term distraction and all of the signs of the chemo putting the MCL into remission for a long time - the signs are all VERY good.

4 Comments


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Trebs,

 

First of all, thanks for taking the time to update us on how you're doing. It has to be tough, really tough, to be kicked in the ass physically especially when we're so close to an election that you've been working your ass off for.

 

I read a book recently, "Eye on the Prize," about the Civil Rights Movement. It had a profound effect on me, seeing what African-American people had to go through just to try to vote. Reading about the marches, the violence, and the deaths involved in trying to achieve this fundamental right, here, in America, is troubling beyond description. It is possible to come away from the book feeling happy and good, though, confident that those days are over and that everyone does, can, and will have the right to vote. Until you dig beneath the surface and realize that those days aren't over after all.

 

So I wish you luck as you deal with your health, and I thank you, a most fervent and sincere thanks, for what you're doing to help voters cast their ballots. Let's just hope it doesn't take another "Selma, Alabama" to fix the system this time.

 

Mark

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Trebs,

 

Thanks for the update. It appears the health care system is working pretty well for you. It's good that you have the treatment plan mapped out and that the treatment scheduling at two different medical centers has worked so well. I hope there will be no glitches in the plan...no rescheduling or anything like that.

 

I have a bone marrow biopsy coming up this afternoon and am a little apprehensive about that. I actually expect that it will not reveal any problem.

 

I wish you all the best and continuing improvement in your health.

 

Mike

 

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Thank you both for your comments and thoughts. One minor word of warning Mike - my first bone marrow biopsy report didn't come back for 8 days - and even then, they did two amendments afterwards as they did more pathology on it. I'm not trying to scare you, more just reassure you that if you don't hear for a bit, it's more than normal.

 

One more quick update - on the 2nd (of 6) doses on Cytoxan - 3 hour drips every 12 hours so last one of Cytoxan will be Friday morning. Then I'll have 3 days (Fri - Sun) of Doxorubicin and then Monday morning, Vincristine which - ick - will be done as a lumbar punch (it needs to be put into the spinal fluid). Once that's done, I'll check out on Monday (later than I thought - I had hoped for Friday but no big). Part of it is where he could double-up on some of the meds, he doesn't want to this first time to make sure if I have a reaction, he'll know exactly what drug it is that's causing the reaction. And though I'll be here longer, it's also good because they're constantly keeping an eye on me and watching for any negative reactions.

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Hello love! Catching up on how you're doing.

 

I'm glad that they're taking such good care of you, and I love the hat! It's very you and makes you look all kinds of "I should be in Paris being all artsy."

 

I'm sorry that you're out of commission for the election, but I'm very happy to hear that, so far, you're reacting well to the medication.

 

Let me know if there's anything I can do... It's only like a 7 hour drive ;)

 

All my love!

 

<3

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