Friday, January 27, 2006

First Velcade Cycle is Over

Hello everyone. I wrote a lengthy post yesterday but alas the blog site went down in the midst of my writing and I lost it all. So I took 24 hours to recover and to see how much I can reconstruct. Yesterday (Thursday) I received my final velcade shot for the first phase along with an IV of zometa to keep building those bones back up. The side effects these past 2 weeks have included some nausea, which is controlled by meds, some neuropathy (shooting pains in the feet and some in the hands), which is tolerable, and significant fatigue the day after each of my velcade shots--Tuesdays and Fridays are energy challenges. But by the time I'm going in for my next shot, I seem to be feeling better. I am looking forward to having next week off from the velcade. My white count and neutrophils continue to fall and I am now neutropenic. Platelets are also low. I'm told this is most likely due to the velcade and we are hoping to see these numbers rise during my week off. They will check my myeloma numbers when I return for my first shot of the second cycle (Feb. 6th). I won't have the results until Wed. or Thurs. of that week and will report once I have more info.

My brother Mike is planning a visit next week and we are looking forward to it. We, as always, have a few jobs for him but mostly hope to just have some fun.

Both of the girls (young women to be more accurate) have returned to school. The house isn't as quiet as you might think as Catherine has started her part time job here in Cherry Creek and is here 3 days a week. While she is very busy with her work, course load and commute to Boulder, we are elated she is here so often and she also gets a good home cooked meal. Julia is taking calculus this block and is not happy. Her outlet? She plans to go skiing every weekend. Sounds like a gene I might have passed on to her.

Speaking of home cooking, Susan's cousin, Eileen Stinson, is on assignment here in Denver for the next 6 months and is staying at the JW Marriott here in Cherry Creek. Eileen is a fabulous Italian cook and has spent a few hours in our kitchen already. mmmmmm, delicious. She is also very funny and the girls think she is hysterical. Susan has long bemoaned the absence of family "out in the boondocks" so she is very happy a family member is now nearby.

With the posting from Antarctica my brother Tom commented that we are only missing posts from Africa and South America and we will have communicated with every one of the 7 continents. Not bad for a North Dakotan from the north side of the tracks.

So, I am doing well. My disease feels as if it has moved from dealing with acute situations to a chronic disease. While it is easier not to have to wrestle with the daily pain issues, the idea of always having to deal with these cancer treatments and the physical limitations due to my lack of energy and my back problems is hard to accept. My struggle with whether I will ever be able to try another case is another issue we'll leave for another day. I know we all age and as we do we will have to confront these issues; I just wasn't prepared to face these issues at the young age of 53. So be it. Don't worry, we still know how to laugh and have fun and as I continue to recover the from transplant we are certainly finding ourselves laughing a bit more. So, once again, stay with us as we walk this path and let's not forget to have some fun along the way. Love, Dan


sigunjoe said...

Dear Dan,

Thanks for keeping us up to date. So glad the first cycle of Vecade is over. Next week will be 'normal' for you -- that is a relief. Were you able to take a daily walk despite those shooting pains in your feet?? Did the pain let you sleep at night? I hope that you were able to eat normally all those days despite the nausea. I will try to call this week-end to get an answer to my questions!

Talking about eating: I have never seen friends eat so ravenously as last night; we had six guests; we emptied two bottles of champagne at the beginning; they ate tons of hors d'oeuvres (foie gras, tapenade -- made by Christiane -- eggplant salad, a tarama concoction on endive leves, and tiny feta turnovers; during dinner we emptied five bottles of good red and ate an 'Arabian' lamb stew with fresh ginger, cumin, honey, fresh coriander and slivered almonds. With all that wine everybody was in a grand mood. That stew was sooo good, I promise I will make it for you soon.

We are having such cold weather here, it is quite amazing. I am glad we live in a modern, tight apt; the place at rue Lincoln, as much as I loved it, was so draughty; I was always cold there, and I would probably be freezing there now! But actually I should not complain; I talked to my ex sister-in-law whose house is in the middle of a vinyard beetween Frankfurt and Mainz, and she said that their temp is 20 degrees lower than in Paris...

Bises, Sigun.

Arlene said...

Hi Guys,

Thanks for the update! You know all of us very well. I am sure I was not the only one checking the blog fairly often yesterday.

Enjoy this week free from the heavy duty stuff.

Yes, Eileen can cook! Mangia bene!

Talk to you soon.

Love you all,


Sheila Carpenter said...

Hi Dan - you will try a case again; it's just going to be a while. I suggest you use your energy for work in keeping up with the periodicals so when you're strong enough to go back, you don't have to play catch-up. I'm so glad you have this blog so we can keep up with you. Love, Sheila

Brother Ted said...

Like so many others, I can't wait to get progress reports. I hope that our needs don't place an undo burden on you. I am always rewarded by your postings. Family, friends, good food and laughter; those are the measures of a good life. You are doing well my friend. Love, Ted

Ingrid said...

Well said, Ted. But still I'm surprised none of the 4 bloggers who answered by now, did not see the really great news on the blog that our beloved Dan posted this time. I read it just a few hours after you posted it, but I wanted to see first what the other bloggers will answer. Therefore now I'm wondering, whether I might be the only one who read this most important statement that you Dan gave this time.
You wrote that you realized that: My disease feels as if it has moved from dealing with acute situations to A CHRONIC DISEASE.

Here we go! My compliment Dan! You got it. THAT is the right attitude.
That might sound to you like a surrender, but I bet you, it is the winner. Dealing with a chronic disease is no fun, I can tell you that. But dealing with a chronic disease means simply and nothing more than: fighting it, all over and all over, again and again.
No minute of rest, I'm sorry, but a continueing, neverending war.
No battles to win, but a neverending war to fight.

THAT is, what a chronic disease is.
And if you deal with THAT, then you are in good shape, then you got to the high position of: it will NOT kill me, because I will not allow it to kill me.

And you continue to write:
While it is easier not to have to wrestle with the daily pain issues, the idea of always having to deal with these cancer treatments and the physical limitations due to my lack of energy and my back problems is hard to accept.

Hard to accept ??? Wait a minute! I think it is not too hard to accept, because it means that YOU ARE ALIVE !!! Do you see what I mean?
OK, you might not anymore have the life you had before, yes, there will be a million of limitations, BUT it means that you are alive.

NOW you found the right place where to be in your mind to fight this cancer. That should be day one. With millions of days to follow. Up and downs will happen, but you will fight it and never surrender.

I'm soooooo glad you wrote that. That is the best sign of victory, and still I know you wrote it probably with tears in your eyes.
I hope I could dry those tears a little bit in helping you to see how wonderful it is what you wrote. Welcome to the survivor fighters. Now I know you made it already.

The tuscan sun is shining again and waiting for you to welcome you here, sometimes soon.

A biiiiiiiiiiiiig hug, I love you,

Shawn and Jaike said...

Ditto Brother Ted,
"Family, friends, good food and laughter; those are the measures of a good life. You are doing well my friend." If success is measured by the above, you all have already passed go. Enjoy your time off. Thinking of you all often. Love, shawn

nina said...

dear dan, glad to hear you have a week of respite from the treatments. i can only imagine the energy it takes simply to get through them; the grin and bear it methodology is a good one. then when you hit a moment of despair, you let yourself fell it a little and then you get right back to fighting and the grin and bear it. i wanted to respond to your last posting about exploring alternatives, but i can never remember my password here. i even wrote it down and it's not right! i have some information to share but i'll try phoning you. i came this (!!) close to seeing a healer in brazil. i'll have a full report by mid february from a close friend who is going.
love, laughter, friends, good food... that's living!
love, nina

sigunjoe said...

Dear Dan,
Sigun and I attended a lecture at the American Cathedral on Sunday morning that made both of us think about the emotional slopes that you and Susan and Catherine and Julia struggle on every day right now. I have been thinking about what the lecturer, a psychologist Sigun knows and admires, talked about and am more and more impressed as I apply it to my own life even in a rudimentary way.
The talk was entitled "Learned Optimism," based on a book of the same name by Martin Seligman. The book in turn is the result of Seligman's own clinical studies of people who had been through heavy times and not done well, subjects he termed to have "learned helplessness." But as his studies progressed, he found that around a third of those studied had not learned healplessness during their hard times. He found that resilience of thinking was at the bottom of their success in being able to move on. Sensing how to think about events in this flexible way allowed them to see negative events as temporary, specific and external. Those who saw similar events as permanent, general and internal were those who found themselves in a well of learned helplessness. They tended to blame the world for their problems and to wind up as victims. Those blessed with learned optimism tended to be more successful in life and to have stronger immune systems. The therapist giving us the lecture said she has turned pessimists into optimists in four weeks. She says this is all very liberating no matter what the circumstances. When I asked if this was not all a bit shallow, her husband accused me of being "too French," which means trying to be smarter than the expert. Perhaps, but this exchange caused her to come up with a really intriguing phrase, "flexible optimism," which showed me that she was not proposing a state of Disneyworld dopiness. I find all this very compelling, and am trying to get Alex interested in it.
The therapist told me you have to order the book on Amazon because it is not new and most stores do not stock it. For what it is worth.
Sigun and I just came from seeing "Good Night and Good Luck," George Clooney's fine film about Ed Murrow's battle with Joe McCarthy. We recommend it highly.
Love to all,

Sailor Hawkins said...

Dear Dan,

Thanks for the posting recreation. I hate when that happens!!!:) I continue to send prayers, energy, light and love your way. You and your family are very well loved by many. Keep up the good fight. You are a winner. Love, Sailor Hawkins

Ingrid said...

Ready for round two ???

If I remember well, tomorrow you start round two with the Velcade.
I'm thinking a lot of you and I'm glad that next Friday I can check on you personally. I will drop in Friday late morning to see you and Susan.
So be strong, like you've always been, and simply sleep when you get weak.
I hope the nausea will not be too bad again and send you two big hugs, one for you and one for Susan.

sigunjoe said...

Dear Dan,

Today you are starting on the second cycle of Velcade. We are thinking of you constantly and are sending lots of good energy and love. Sigun.

Arlene said...


We are with both you today.

Love you,


B.J. said...

Hi Dan.. Happy monday to you.. I am trying to familiarize myself with blogging.whew I am in.

Thank you for doing this- As strange as it may seem- the details are interesting but know my heart kicks in often and I wish it wasnt all for real.. but then it is ..isnt it.

Thinking of you always (love giving hugs to dad and Joan thru the phone wires) so guess my hugs to you will be via the net.
xoxoxo BJ