Pat’s Place: Sometimes You Just Have To Laugh…
I completed my grueling, pre-stem cell transplant testing this week.
I also learned I am right on schedule to undergo my autologous stem cell transplant (using my own stem cells) beginning Monday.
The plan is for me to stay on the Moffitt Cancer Center Transplant Unit for one or two weeks. At that point, I would be moved to outpatient housing nearby for an additional two or three weeks, as I start my long road to recovery.
I hope to be able to continue to write my column weekly throughout the process, sharing some of the ups and downs I experience along the way.
Overall, my pre-transplant testing experience was a positive one. Of course there were a few painful jabs and pokes. There was also a lot of waiting and wasted time—which I hate!
But what I will remember most about the experience are a number of strange, almost bizarre things I experienced and witnessed while hanging around a multi-cultural institution like Moffitt for two long days. Like the saying goes: You can’t make this stuff up!
Moffitt Cancer Center is located on the campus of the University of South Florida (USF), just north of Tampa. It is probably average size for a research/cancer care facility.
But what makes it unique is the racial and ethnic diversity of both the patients and staff. Each department seems to have its own subculture and individual identities. This mixing of cultures and different departmental personalities can lead to an unusual number of miscommunications and misunderstandings.
On one hand, this is a really cool thing. Each department functions like a small village, designed to help patients feel like they are part of a family.
On the other hand, since staffers from each department move at a different pace, I observed lots of interesting, crazy staff-to-staff and patient-to-staff interactions as I moved from department to department. Let’s just say communication is far from seamless.
For example, while I was trying to check-in on my first day, I found myself standing between a pair of staffers from somewhere in Africa, speaking one language, and two staffers and a patient’s family, speaking animatedly in Spanish.
There I stood—trying to check-in—caught in a multi-cultural crossfire! I finally sat back down and waited for the dust to settle before trying again. My day hadn’t even started yet!
Once I was checked-in and processed, I ran into another interesting dilemma: specialization.
I was scheduled to receive an antibiotic IV in the Bone Marrow Transplant Infusion Unit. You should have seen the face of the nice, forty-something nurse after she discovered I didn’t have a port.
She began nervously pacing and fidgeting, leaving and entering my room several times before admitting she hadn’t started an IV for years. Neither had another nurse she flagged down in the hall. Really? An infusion unit where no one knows how to start an IV? Turns out everyone who comes to the unit already has a port. Who knew?
And I believe her, since it took over ten minutes for her to find the supplies necessary to even start an IV—and then ten more minutes to find another nurse willing to stick me.
By then I was too busy shaking my head and laughing out loud. You can’t make this stuff up!
I’ve saved the best for last. One of the great things about Moffitt is the front door, valet parking. All you do is pull up and leave the keys in your vehicle, and the young, hard-working USF students do the rest.
After finishing a long day of testing, I expected to find my vehicle parked back in front of the entrance, running and ready to go. But my van was nowhere to be seen.
I had given the attendant my claim-stub. Check. A tall, USF student had literally run into the parking garage, keys in hand. Check. So why was he walking back without my vehicle?
They had lost my van. Seriously, how do you lose a Chrysler Caravan?
Turns out the attendant had put my keys on the wrong numbered hook that morning. It took three staffers 15 minutes to find it—and that’s after I helped them identify my keys! Good thing my lucky Green Bay Packer medallion was attached to my key ring.
The least they could have done is replace my six year old van with someone else’s shiny new sports car.
Sometimes you just have to laugh…
Feel good and keep smiling! Pat
If you are interested in writing a regular column to be published on The Myeloma Beacon, please contact the Beacon team at .
Glad you were laughing. I would not be especially about the IV and the lost car. Life is tough enough for some of us we don't need others to make it tougher. However, I have had pleasant experiences at Moffitt so far.
What other choice do we have but to laugh, Richard? Cry? That could work, too. Moffitt isn't perfect, but I feel comfortable there. Most difficult part is staying flexible. You loose control of a large part of your life when you are a patient. That's the hardest part- Pat
Best of luck to you, Pat. The STC is not for the faint of heart. You have to be strong of body and mind and spirit. My mom is almost 100 days post-transplant and we are finally understanding the benefits of it. You know how grueling it will be so I won't dwell on the details. I'll be thinking of you; our mantra was "visualize stem cell growth." Best, Stephanie
Maybe it's Florida thing Pat as I get equally frustrated at my Hospital but have leatnt very slowly to work with it but my husband on the other hand who worksd in Logistics cannot understand the long and extreme variances in time to administer the same set of drugs twice a week for me. Sometimes we are in and out the chemo centre in 45 mins(a great day) other times it can be 2 hours.
I too would be a little hesitant about their lack of IV insertion experience. I guess I just expect these Cancer Hospitals that are very well known to be excellent in every way after all it is not free.
Pat
I found your experience at Moffitt interesting but totally different from the experiences I've had for the last 5 years, but I guess it's all based on everyones' personal worldview and experiences.
For example, Moffitt is the only place where I've had my blood taken and not even feel the needle.
When asked if I have a port and I say no, there has been no issue with it. I haven't had a transplant but I was at the BMT Center as a patient for 5 years.
My "free" valet parked car has always been brought to me quickly and without incident.
The staff at Moffitt is one of the best I've seen, and regardless of what other language some of them speak, they speak English fluently. It is truly an international center with international patients.
Hopefully the rest of your experiences will be great and that all turns out well for you.
I'm glad your Moffitt experience has been so good, Sandy! For the record, I'm not slamming Moffitt. I like the place, and I have had lots of good experiences there, too. But that wouldn't make a very interesting column, would it? Mayo Clinic is the gold standard of organization and service. But when I was an outpatient there for 15 days, you can always find cracks or things which don't go right. I like the multicultural aspect of Moffitt. But it is not well organized. Come on--having to check-in to check-in? Crazy! Pat
Good luck with everything Pat. The actual transplant is pretty anti-climatic. It's all the stuff leading up to it and the general feeling crappy! Watching the numbers everyday is the local pass time. It's quite fascinating really. So your target is 21 days. You should be recovering enough to be able to go home with precaution. I'll be keeping you in my heart buddy.
Interesting story, Pat. I have to say that, pre-dx, a story like that would have made me CRAZY... but one's persepective sure changes when one has to deal first-and-foremost with something deadly like M-M, eh?
Best wishes on the coming days, bud. I look forward to reading more about it... mine's coming up too, if the numbers line up.
Email me and let me know how your are doing and what you mean by "numbers lining up," John- Pat
http://www.myelomabeacon.com/forum/could-use-some-bloodwork-interpretation-help-t474.html
My bloodwork.. I think I iGg (which is the cancerous) is still a bit high.
I should probably read my own forum threads a whole lot better (the confusion thing is getting to me): my concerns here have already been answered days ago by the good Dr Libby.
http://www.myelomabeacon.com/forum/optimal-paraprotein-level-for-stem-cell-transplant-t468.html
Best to laugh it off but keep an eye out. After all they are only human. I pray everything goes well for you pat and I will be looking for your post's.
Pat, our best to you as you proceed to transplant -- our prayers will be with you and Pattie. Rex and Kay
Glad you are using the forum, John! And thanks for reading and following my story, Nelson, Rex and Kay. That's what helps keep me going! Pat
Pat, I think Ms. Puete is right. While certainly not real fun, my ASCT in March 2010 was not nearly as bad as I imagined it would be. Sure I felt like I had the flu for 8 days or so, sure I lost my hair for a few months, sure food tasted funny and I lost my appetite for a while, sure I had a lack of get up and go for a few months. But from SC collection to back at work (and the gym) was only 5 weeks. Now I feel fine, in total remission, and enjoying this rebirth of my life. I credit my fairly benign experience with my good doctor's consistent advise: Get in shape and stay there. Chuck Whitehead
Thank you, Chuck! I will share this with my wife. I'm due for some good luck--and I can still write if I "have the flu!" Just remember is took me 12 days to harvest 9 million stem cells--and then three more days of IV antibiotics to treat my infected line. 15 days. So I know things don't always go as planned. I hear horror stories in emails a lot, and when I meet people at support group meetings where I speak. 10 days of vomiting. Loss of site (the patient is blind). Horrible mucosits. And my worst fear: That like a number of my fellow patients, the SCT doesn't work. I should write about this. Fine line between preparing for the worst and overreacting and unrealistic optimism. I'm just trying to be prepared. Nice to hear good stories, too! Much appreciated! Pat
Dear Pat,
I have always looked forward to reading your articles. You make me smile and you give me hope.
I've basically been following the same path as you with MM, and I am grateful that you'll be sharing your transplant journey with us.
When I was a child, I remember my mother telling my brother, to give him courage before hel left the house, "Knock 'em dead". It seems oddly appropriate now. Knock 'em dead Pat.
Linda
I'm glad I can make you smile once in a while, Linda! Your kind words make me smile! Are you considering a SCT--or have you already had one? Best of luck- Pat
Hi Pat, see if posting here is easier than your other site. As I've said before my outpatient SCT went quite well. I was really nervous about putting the port in and taking it out. No problem either way. I was really glad to have it as there was never a stick through the entire process. You have already harvested your stem cells. This was my problem area. I spiked a fever the weekend prior to harvest and had pain that was equal to my two knee replacements. I was hospitalized with concern over infection. Turned out my body created so many stem cells that they pooled and caused the pain. My harvest was about two hours and I produced somewhere around 30 million cells. Your transplant will skip over this. I hope when you are on the other side of this you will agree while not a walk in the park it can go rather smoothly. Hey, no one told me about no house cleaning, I should have had your doctor! Good thoughts to you and Pattie. Linda
Thanks, Linda! Glad yours went so well. 30 million cells? Best I could do was an average of 600,000 a day. Took me twelve days to get 9 million! Pat
Pat, As a nearly 3-year survivor of an autologous stem cell transplant, I applaud and appreciate your being able to find humor in your ordeal at the hospital. When you say what should we do besides laugh, cry? I totally agree. While I've been brought to hell and back twice in my fight against cancer, I did it with a positive attitude. I have photos of me taken in my worst days..and I have a smile on my face. SCT is a tough few weeks, no doubt. But I hope you'll find it's completely worth it for a month of misery. The payoff is years of life. No one can guarantee how many, but isn't that the case with everyone? I have kept a positive attitude throughout and know you will, too.
I am starting a blog to share my experiences and views on all of this. I hope you can check it out and find inspiration to keep up the fight. http://viewfromthehandicappedspace.blogspot.com/
I've been told my attitude was a factor in my recovery. I was wondering if others think their attitude helped them along the way?
Best of luck to you as you embark on this crucial journey.
Laura
Very inspirational, Laura! Thanks for starting a blog to help us all stay grounded- Pat
Hi Pat and Pattie,
I Hope everything goes well for you.I am sure your 'strikes'have all been excellent and the team around you will get you back to home base safely.Remember we are all with you to help you around each corner and you will never be alone.Your meaningful and positive writings are very inspirational and help give me the strength and courage to fight my very dangerous battle.As a family,our thoughts and
prayers are with you and a very special prayer tonight that the good strong cells from your own body are exceptionally victorious.
Good luck Pat, and I'll be fighting by your side every day.
John Burton
(SydneyAustralia)Pat please save your energy and do not reply to my
message.I will read about your progress in your weekly update and I
know what your reply would be.
Get new Myeloma Beacon articles by email.