Now that I have safely transitioned myself and my family to Boston, I feel that I can guide others in the process. I had a terrible time being referred to the right people who had the right information. I tried to rely on my social worker, but unfortunately, she has proven herself very limited in the guidance she provides. Maybe, I’m asking the wrong person the wrong questions. But then again, isn’t she supposed to refer me to the right people. I thought that was the social workers job.
My main motivation for going to Boston was the professionalism of the auxillary staff. The Doctor is a rare face you will see as a patient. They are, obviously, an integral part of your treatment, but you’ll be dealing face to face with housing coordinators, nurse program managers, and clinical case managers as well.
Look around at how friendly the desk people are. They should make you as comfortable as possible. You are going to be sick and suffering a lot in their presence. You want everybody you encounter to make your experience as positive as possible.
The most frustrating aspect of my treatment was preparing for it from three hours and hundreds of miles away. My information was only as good as the people providing it. I found out, once I showed up here for my transplant, I had been missing some key people.
It’s difficult enough picking up, stopping your life as you know it, and moving two hundred miles away. It’s even more difficult to coordinate your move when you’re sick, depressed, and frustrated. Yelling at people trying to help you won’t do you any good, but I’m going to let you know what I found that works.
I heard a rumor there are about twenty people in the process of transitioning their treatment from DHMC to Dana Farber. These, and the people who will deal with this in the future, are the ones I’m writing this for. You do not need any more stress in your life than you all ready have.
Here goes the process:
Immediately upon meeting with my doctor and his PA, when I gave the word that I would be continuing my care at Dana Farber, I had my blood drawn to start a formal donor search. This has to be done on-site. I was referred to my program nurse manager and a social worker. I was given the cards of both these woman so I could access them as needed during my transition time.
Have a place where you can organize the professional cards you receive!
The program nurse manager was a fabulous woman. She was a stellar resource for any health related problems I encountered during my “doctor limbo” time. That would be the time between hospitals where I wasn’t quite sure who to turn to when I was having a problem.
She also was the direct line to my doctor and she reviewed all the limitations and restrictions I would have during the transplant and for the hundred days after while engraftment took place.
During my period in limbo, I also returned to my primary care physician, who had been out of the loop for a while, and updated him on my situation during this period.
I asked a few things of my case manager. Dana Farber gives $500 in financial aid to its patients. I started asking for this in July. I don’t know if I’m asking the right person, because I haven’t seen it.
I also asked her for the children’s entertainment package she said existed. I haven’t seen that, but she did refer me to the concierge desk and the Bloom Library, which is a fabulous load of books and information for all age groups on a breadth of subjects. They also have patient and children’s entertainment back packs. Definitely, go find these. They are free.
I asked the social worker about places to stay post-treatment. She informed me that The Best Western on Longwood, within 500 m of the Dana Farber entrance, had patient rates at $36 a night. She did not tell me how to secure these rooms.
After a couple months of stress and pestering. I was told there was a CLINICAL HOUSING COORDINATOR. Her name is Nadia. She is worth her name in gold. To reach Nadia, call the standard Dana Farber phone number and ask to be connected with Nadia, the “housing coordinator” or “Transplant Resource Specialist.” You can contact her at (617)632-2228.
My SW did not give this information up until Sept. Meanwhile, I was freaking out about where I was going to live because Sept. had started and I had no apartment.
The Best Western includes a queen and twin bed, a private bathroom, and a kitchenette.
I was also given the option of “The Family Inn” where you share certain living spaces, like the bathroom and the kitchen. However, it has a playroom and a playground outback. It also has on-site laundry. The number there is(617)566-3430. I did not qualify due to my restrictions after my BMT.
Apartments are available in the Longwood Galleria. Rates are $1375 a month for a studio, $1580 for a one bedroom, and $2037 for a two bedroom. These are available in the longwood galleria next to the food court.
Finally, The American Cancer Society is open a 40 Unit housing facility for patients receiving care at Dana Farber. There is an application process. Call Nadia for those details.
I also had a Stem Cell Transplant Clinical Coordinator named Gail Delaney. Everyone undergoing a BMT needs one of these. If it’s not ponied up in your appointment, you should ask for one. She was incredibly efficient. She was in charge of coordinating my pre-transplant appointments and getting me in for my transplant. She was incredibly efficient. I can only hope every one in her job is as well-organized as she is.
Finally, on the day of my admission, I found out who should have helped coordinate my out-patient care, possibly the housing, but definitely the outpatient VNA and scheduling for the first couple weeks outpatient clinic visits. Her name is Carol Ann Orrico, she is an RN Care Coordinator. Her email is firstname.lastname@example.org if you have any questions about coordinating your outpatient care. It may be more reliable to ask your program RN who your specific RN Care Coordinator is.
Half the fight is knowing what to ask for. I didn’t even know these people existed until I was stumbling around the system. I hope nobody has to face the anxiety I faced in trying to coordinate my medical care, along with my bills, and caring for my family.
In the future, it would be nice if both cancer centers had people involved in helping patients transition from one facility to another. I’m sure most people with the capability of doing this are already overworked, but I think Dana Farber and DHMC could accomplish assisting in transitioning, as it seems they communicate very well on the moving home aspect of treatment and updates from doctor to doctor.
Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.
He has since died, and I took on the cause of making cancer care more transparent for everybody.
Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."
I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.
I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."