THE UPDATE
- UP: They collected enough stem cells in only 3 days (last Mon-Weds)!
- DOWN: I had fevers and aches each afternoon/evening…presumably from the Neupogen shots they gave me to put my blood cell production into overdrive.
- UP: Thursday was recovery day…Friday I was ready to get out of the house! The Neupogen-induced fevers and aches seemed to be over.
- DOWN: After experiencing the joy of just getting out to Trader Joe’s and having lunch with Ben and Tracey, I woke from a nap with a 103.5 fever. We rushed over to COH, they took lots of blood cultures, did lots of tests, gave me IV antibiotics. After bringing the fever down with Tylenol and Motrin shortly before midnight, we headed home knowing nothing more about the source of the fever than when we arrived. I slept a lot, with the fever spiking randomly, but getting lower and less frequent each day. Still no clue what it was caused by.
- UP: My college kids came home and I got to hang with them and go to a really nice Passover Seder at the Farrs with 25 or so close friends. While the fevers put a little damper on things, it was still great.
- UP: As of today, I’m out and about again.
So, what’s next? I head into COH for the transplant one week from today (the 29th). I’d sure like to stay healthy between now and then!
THE MUSING
Why do many people with a chronic illness end up with a reduced contact with friends and family? This is something I think about, because I feel short-term-chronic and I don’t want my world to shrink (so don’t think I’m talking about you). I don’t think it is as simple as people don’t like to be around sick people. I’m not claiming to know the answers here, but here are some of my observations (about the semi-mobile, chronically ill…obviously I’m not talking about someone who is bed-ridden, immobilized or otherwise so physically limited that there is little to do be done):
- The sick person’s range of interests and topics of conversation narrow. Their own thoughts can be overwhelmed by their situation. Even though others might be interested, they can’t make it the *only* topic of conversation. Does being sick make it OK to talk about yourself a lot? Perhaps, but how long could you realistically expect a friend or family member to spend on that topic?
- What you do (or can do) together might limited. Sitting and talking is great, but that feels like a “visit”, not getting together with your friend(s). The challenge is to figure out how to get together without it seeming like visiting a sick friend. You may or may not be able to find overlapping interests…even if you had them before.
- Friends might get depressed being around a sick person. While trying to figure out non-sick things to do and talk about might help, it also might not. This is more a function of the friend.
- The sick person might just not want to see anyone. They feel depressed or unworthy or just want to isolate themselves. This is really sad.
But there are always the people in your life that will be there, will recognize the “pathology” of the sick-person-relationship and work to pull you both out of it. That’s a very special skill and level of commitment. It isn’t reasonable to expect everyone to be able to do this – in most cases, I think the person who is sick will have to make some special effort to minimize their isolation.
WHATEVER
I’m so tired of (mostly service-type people) not doing what they say they will do. Not ship when they say they will. Not show up when they say they will. Not call back when they say they will. Maybe that is the number one character attribute for success: just do what you say you will do! (which, I think, you all do!)
So, when is the last time you went to Men’s Warehouse of Jos. A Bank? Their pricing and merchandising policies are maddening. The $800 suit is buy one get one free next week. No, not those suits, but these. The $75 belt is on a buy one get 3 free deal next week (after telling him none of their belts excited me to the $75 level). Anyway, can’t they just tell me a reasonable price? I don’t want to come back next week or the week after. Do they do all that just for the folks who actually pay full price?
(OK, those were nearly Andy Rooney level rants…might not be interesting at all…but anything goes in this section)
Cliphoma 
Working for an obstetrician would be a very intrnestieg job. I currently work doing admissions and dispositions as well in my job and one thing I do, is take down all the information on the babies being born. Its amazing how many babies are born in just one month at the hospital, I do a minimum of 20 babies a month, and sometime the unfortunate part of documentation on babies who do not make it. Its a stressful field as well and you really have to practice empathy for those parents who have to deal with things going wrong.
LikeLike
hey there and thank you for your information – I have definitely picked up anything new from right here.
I did however expertise several technical points using this website, since I experienced to
reload the website many times previous to I could get it to load properly.
I had been wondering if your web host is OK?
Not that I am complaining, but sluggish loading instances times will very frequently
affect your placement in google and could damage your high quality
score if ads and marketing with Adwords.
Anyway I’m adding this RSS to my email and can look out for a lot more of your respective fascinating content.
Make sure you update this again very soon.
LikeLike
Cliff and Tracey, your journey is inspiring.
The Linn family has had its share of hospital experiences with Chris’s dad in ICU and me admitted in ER with a “fake” stroke on right side. We all had lots of conversations with many of the service providers that you speak so eloquently about in your blog.
Also Lymphoma seems to be around us. My former work colleague and friend Gina, is also experiencing a second round of Lymphoma.
Green is your cancer color, so tomorrow, I ski for you and Gina. I forwarded her your blog because I thought it might help her.
Again I say you are so inspiring.
We are well here now in Portland. Every week has held a surprise. Sound good, some not so good.
But through it all, we stuck together as a family, that is so helpful.
We send our love from rainy chilly Portland. Land of the mossbacks.
Barb & Chris
LikeLike
Dear Cliff and Tracey. Hopefully we can come to the COH to visit and while there give some blood in your name. We were thrilled you made it to the cousins gathering. We keep you and your family in our prayers and thoughts all the time. Your optomism is contagious as is your attitude. our love to you and your family. You have a huge circle of friends and family surrounding you in a warm hug.
LikeLike
Thanks Clif, for reminding us to look more deeply into the mirror occasionally. Maybe we hesitate to visit our ill friends or relatives more frequently because we are uncertain what to say. Hey, don’t worry, that will fix itself just by our being there. Bring a deck of cards or an interesting article you recently read. They may not be appropriate but it might be uplifting. And yes, being sick does make it OK to talk about yourself a lot. We are there to lift you out of the doldrums even if for a short time, and listening is our gift.
LikeLike
Excuse the typo on a prior post: I meant “do so,” not “due so.”
LikeLike
BTW, I recommend visiting http://www.coursera.org, and joining the course “A Beginner’s Guide to Irrational Behavior,” featuring Prof Dan Ariely (his story; he was an Israeli army tank crew member who suffered horrific burns over most of his body, and for months was subject to irrational wound care by gruff nurses, as well as having to grapple with the necessity to take interferon when it was experimental for hepatitis C; he was the only one in a study of hundreds of patients who took each and every dose of this medication, which causes nausea and flu-like symptoms, and has to be taken 3 days per week, for months on end).
These experiences led him to study the irrational choices we all make, particularly when it comes to economic decisions.
On a mundane level, his findings explain why stores offer the kinds of enticements Cliff has experienced while shopping. There is method to their seeming madness.
Ariely is irreverent, and his humor is politically incorrect but funny as heck. I also think he has created a ‘brand’ that serves him well.
The course is coming to an end, but you can watch the video lectures. Very stimulating, and even entertaining.
LikeLike
I suspect people who decrease contact with someone who is sick may due so because:
1) it reminds them of their own frailty and mortality;
2) they are afraid the illness might be contagious [this can be on an unconsciousness level];
3) they are ignorant;
4) they are selfish;
5) they don’t like bald men;
6) all of the above.
Cliff: toupee? Large yarmulka?
🙂
LikeLike
just so you know “some” folks read your blog…. you really caught my
attention when you mentioned andy rooney.
i wish i had counted the number of times i e-mailed him to get a real job
instead of bitching about .people who are doing some work even if it doesn’t
meet his expectations.
ed speicher
ct.
LikeLike
First I want to say how amazing the Seder was. About the question of people and their changed relationship with “sick” people. You certainly don’t have any challenge holding a conversation on any topic, even when you aren’t feeling like your normal self. I personally think that people struggle with deciding what to talk about because everything else but your battle has less meaning. What could possibly be as important. At the end of the day, all of us just want to help but aren’t sure how, want to say the right thing but aren’t sure what that is, and some just feel that you have your hands full and are afraid to bother you. You are an amazing man with an amazing wife, amazing children and amazing strength. I love you all!
LikeLike
Love your Ups… Sorry about the long day at COH.
Up: You’re a beast at Words with Friends
Up: You are loved.
Up: The inter-web (as Matt calls it) makes virtual hugs possible.
((((Hugs))))
Jen and Dave
LikeLike
Talk about a roller coaster, btw, I hate roller coasters, I am so sorry you weren’t well right after I saw you at Costco…which was a highlight of my day!
I agree with your “whatever” my motto is… “Say what you mean, and mean what you say”…
Enjoy your outing today!
Annie
LikeLike
And, Whatever. Sometimes I think this is my greatest success in the service industry and why I seem to have transcended my limited education relating to my career. Managing expectations is at the core of all service success. I’ve seen those who don’t understand this claim to “fix” the problem yet still infuriated their customer. While others can earn the accolades of their customer even when the problem isn’t necessarily “fixed”. Of course while one will have to fix something once in a while, I think all service feels shitty w/o expectation management.
LikeLike
So, about your musing – I think you’re right. But one of my nieces said they were afraid to see Ernie now. I wondered what she was afraid of, but she really couldn’t or wouldn’t say. Perhaps she was afraid she was looking into a mirror of her own future. Maybe everyone is to some extent and that might be one reason they stay away.
For myself, I try to appear as unchanged as I possibly can without undergoing plastic surgery so that I won’t be shunned.
It was great to see you at Passover seder!
Love you very much,
Linda
LikeLike