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Trebs' Blog

A blog by Trebs in Member

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About this blog

Lessons STILL being learned...

Entries in this blog

Not really "tomorrow"

Gotta remember to stop making promises in my blog, like "I'll post tomorrow" - heh.   ANYWAYS...   So - the doctor visit LAST WEEK went relatively well. Dr Arai was still happy with my progress, only thing was, I also got a dose of reality at the same time. I had been hoping that I might be able to go back to work in say, early September. So I brought it up as far as - "I know the schedule says I can go back to work after 5-6 months, but what about earlier". I knew I was in trouble as I
Trebs

Trebs

5

Early night

Good news for once   Well, it's just 8:30PM and I'm already heading to bed. Reason is that we need to get on the road tomorrow around 5:30 AM (or 6AM at the latest) for a 9AM follow-up appointment at Stanford. And ya - NONE of this early morning part is the good news - lol - especially as anyone who knows me in person KNOWS that I am NOT a morning person.   Tomorrow is also day 57 since my transplant. This is the good news part as tomorrow's appointment will be the LAST time I have to go
Trebs

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5

My dogs

Melody is on the left, Zoe is on the right   Two important updates... Healthwise - I'm doing really well. My last appointment with my doctor two weeks ago went well, and I have another followup next Wed. She was very happy with my progress when I saw her - and said I was actually doing better than expected for this point. Today is the 51st day since my transplant - and basically at day 60, my case transfers from my Stanford doctor back to my local oncologist - so next Wed should be the la
Trebs

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5

HOME!

Dan and I just got back to our home in Sacramento about 1/2 hour ago. Car is unpacked and it feels SOOOOOOO F*ING good to be home.
Trebs

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9

Discharged and back at apartment!

Just a quick note to say everything went well, and the hospital discharged me this morning and I'm back at the apartment Dan and I are using near Stanford. Still have to stay here in the "safe zone" area until around July 16th (give or take a day) and have a follow-up appointment tomorrow at the clinic at 10AM, but just feel great not being actually IN the hospital. I gotta say though - usually I'm totally crawling up the walls toward the end of my stays - this one was very pleasant and relax
Trebs

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6

June 25th

First - thank you to Dan for his updates while I've been .... um.... hehe - more "out" of it.   Today has been a very full day. Physically, I'm feeling fantastic. Since I got re-admitted to the hospital last Saturday, I've gone up and down on the fever scale (my first big fever broke Monday morning, and had a 2nd spike yesterday). Today, every one of my temps has been in more of a normal range. Temps in the hospital are taken in Celsius - under 37C is totally normal, 37-38 is a low grade
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10

Stanford chemo/transplant

I've been a little quiet recently, basically just recovering for the collection process which took longer than originally expected by almost a week. So, to make sure I had an adequate recovery time, the rest of my schedule got bumped so instead of having gone in June 3, I am now going in tomorrow, June 10 to start the week of heavy chemo and then a week from today, I'll get the transplant (ie, the cells that were collected from me will be reintroduced).   It will take a while for them to sett
Trebs

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20

Latest update from Stanford

I just wanted to give everyone a bit of an update about what's going on with me. I told some people the details, but figure this would be easier and more comprehensive.   Back in late February, I finished the main chemo treatment for the Mantle Cell Lymphoma (MCL) that I have. After that, did a full round of testing and it showed that I was in complete remission (CR) - WOOT!   What the MCL did to me, was basically cause my bone marrow to produce blood cells in the wrong mixture - way too m
Trebs

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5

Then again (aka - no matter how much you plan...)

Lol - well, plans and all that - don't ALWAYS work out - but sometimes it's for the best.   To better explain - one of the other things I wanted to make sure to do while here is get same-day cancellations envelopes as gifts for each of the people in Dr Spear's office as well as my best nurses. 12 years ago at Clinton's 2nd Inauguration which I came to with my mom, the main post office sold a set of three envelopes - one of Clinton and Gore with a DC cancellation, one of Clinton alone with Li
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6

Sooo many things - ALL GREAT

The feeling here in Washington, DC is .... electric just doesn't give it justice. Dan and I are on SUCH a euphoric high right now - especially with some wonderful recent developments.   But to catch up first - a few people mentioned how much healthier I look in recent pictures (Rigel/MarkA) and I want to thank them. And a big part is that I do FEEL great these past two days. One week ago - um, not so much. See, I got out of the hospital last on Jan 2 and for a week, did fairly well. I me
Trebs

Trebs

5

I'm going to DISNEYLAND!

In a little under 2 hours, Dan and I will get on the road and drive to Anaheim. This trip is his Christmas gift to me - and it is a PERFECT one. I've been feeling SO housebound. We're driving down today, and coming back on Friday - so just 4 days trip but the main thing is being together and out of the house!   Health numbers all looked good when I visited the doctor yesterday (standard weekly appointment) and we're all set for my next chemo in-patient round which will start next Monday.  
Trebs

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11

DC (and boredom)...

First things first - Dan and I are going to the Inauguration and if anyone wants to meet up for lunch on Saturday, Jan 17th in DC, I started a thread.   Overall, my health has been going pretty well. I'm in the hospital right now - got here last Thursday for my "A2" round and I should get out tomorrow night. My next "stay" won't be until Dec 29th (so I will be here for New Years for the "B2" round). But the nice thing is I should be fully functional during Christmas time - and Dan and I are
Trebs

Trebs

8

My next year

Dan and I went to Stanford on Friday and came out of it with a TON of information and things that we now have to consider and start planning for.   The thumbnail sketch of my next year is basically:   Finish chemo. I actually start my next round in the hospital tomorrow and it should last 4 days, 5 at the most so will be home on Friday. Then continuing on a schedule of two weeks home, one week in. Dr Spears thinks that I'll only need to do 3 cycles in total, so that would end sometime in la
Trebs

Trebs

6

Front yard pic and update

Here is a picture I just took of Dan in the front yard - we put up the Obama/Biden sign up last Wed and just got the "No on 8" sign this morning and put it up.     Also - just got back from my weekly check-up with Dr. Spears - again, very happy with my blood numbers and progress. My white blood count is actually LOW right now (this is the one that was originally close to 400 where normal is a range of 4.1-10.9). During last week's treatments, it went under 100 and was happy with last Mond
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4

Feeling FANTASTIC!

I got out of the hospital late Monday night (Oct 27) - as Dan puts it, my last chemo treatment ended about 10:25PM and at 10:28PM. I was on the phone calling Dan to pick me up (I had been packed for 3 hours at that point).   Tuesday was ok (still recovering and tired), but from Wed morning til now, I have been feeling great. I still get tired and can't just go, go, go - but have been accomplishing things around the house and just overall... um... feel great (have I said that before)!   Two
Trebs

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7

Surreal

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 bod
Trebs

Trebs

4

One more dawn, one more day... One Day More!

Tomorrow morn, I'll hear from the hospital on when they want me to come in. So - heh - one last day of freedom before four days of confinement   I've been getting ready - since this chemo treatment will be more intense, hair loss is pretty much guaranteed. Everyone's been telling me to get my hair cut short in advance so when clumps go missing, it doesn't look as bad - so I did. Here is the new shorter haircut.   They've also been telling me I should get a hat. Now, I've NEVER been
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8

Mixed bag

Today was a good day - first one since I got discharged last Wed. I've been really tired all of the time - it's been an effort to just get up and eat. Today I've done dishes, laundry and just generally been able to FUNCTION around the house - it feels great! Caught up on some bills and paperwork - including finally filling out my absentee ballot (Go Obama!)   Yesterday I had back to back doctor appointments. First was Dr Swanson (the surgeon) - he took out the drain, staples and dressing o
Trebs

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9

HOME! (v2)

Just got home from the hospital - 15 days this time... But with my spleen successfully removed and clearer information on exactly what has been happening in my body and how we move forward to treat it, I feel both physically and mentally great.   Still a bit exhausted tho - been a long day and it's not even 2PM yet... but as DK loves to say - afternoon just means naptime for Trebs...
Trebs

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9

Breaking silence...

A lot has happened in the last couple weeks, but mainly haven't felt up to updating the blog.   Right now - I'm doing good. But two weeks ago, I started having slight fevers and my spleen was getting more and more uncomfortable. At night, the only way I could comfortably get sleep was frequently by going out to the couch and sleeping in a sitting position (which thankfully I can do all the time on planes so wasn't a weird experience). When I lay flat, the weight of the spleen and size ju
Trebs

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9

You're a sports car... with one gallon of gas...

Ok - so NOT as wildly optimistic as I was during my post... I am still feeling well, feeling mainly bored with tons of energy - until I actually try to do something. First major time it hit me was Sunday night when I tried to go grocery shopping on my own. I had to pause twice in the store, and as SOON as I got back to the car and had the groceries loaded, I just sat in the drivers seat to rest. Described it to a friend at work and he's the one that coined the phrase that I'm using for thi
Trebs

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15

<HAPPY DANCE>

Oh F**K!!!   Waking up, back at HOME, with Dan at my side after a week... I can't begin to express how happy I am. I really am feeling so well. It is so ironic, having leukemia and going through one chemo treatment, I right now feel BETTER than I have most of this past year. I have energy (due to the transfusions and now having a much better red blood/hemoglobin counts), I'm REALLY well rested (from sitting/laying bored in bed at the hospital for a week), and I have Dan and my dogs back
Trebs

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7

Just a quick note...

FIRST - as usual, THANK YOU everyone that has sent Dan or I messages - or even just sending us your thoughts. We REALLY appreciate all of the support and encouragement.   Now, this is a short entry just cause I'm a bit tired but just for normal reasons (ie, YES, I am still feeling fantastic).   I did get the 2nd of the "F" drug today, so just one more dose tomorrow which they are trying to schedule for the morning so I can go home in early afternoon!!! I'll also talk to the doctor tomorro
Trebs

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2

Post "chemo" and DOING good (so far)

Today ended up a LOT better than I thought it would. I had a little bit of... well... I think everyone that hears "chemo drug" thinks the same things... nausea, throwing up, massive hair loss. And the wikipedia entry on Cytoxan pretty much confirmed all three. I have a real problem with loss of control - so of the three, the thought of vomiting, especially before I could get to a basin, totally freaked me out.   Talking to the doctor this morning REALLY helped. I know, everyone keeps on s
Trebs

Trebs

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