My sister Sarah and I visited the Hope Lodge in Minneapolis, MN this afternoon to gather some information for a project she is working on. I thought why not tag along and see what it is all about. The Hope Lodge provides housing for all people dealing with cancer related issues. They have room to sleep 80 people, which breaks down to 40 people with cancer and their 1 caregiver. This means that my family of a mom, step-dad, 3 sisters, 1 boyfriend, 3 step-brothers (and family’s), 1 black dog, and stuff would not qualify as a resident at the Hope Lodge. Not to say that there is not an intense need for the Hope Lodge, there must be other networks and options for people in my circumstance.
There was no sign or lead-up to me being discharged from Mayo. The doctors met with me in the morning and said, “Since you are stable you are free to go.” And there we were on a snowy afternoon feverishly planning my release. It was a Sunday in the mid of winter in Minnesota. NOTHING HAPPENS.
Drew and Kristine (Team Drugs) were given the almost impossible task of filling 13 prescriptions, which I needed to live (okay not that intense, but I to prevent infection and other sorts, yes to live). After multiple failed attempts to contact my prescription drug insurance by Team Drugs, I got upset (it takes a lot especially since I was all loopy on pain meds) from my hospital bed I called a personal contact and not so nicely yelled, “What do you fucking expect? I did not choose to get sick and choose to get discharged during BUSINESS HOURS.” The pharmacy was then able to fill 11/13 scripts under insurance. We had to pay for the last 2, Heprin Flushes for my PICC line and blood thinners for my clots, out-of-pocket. At the time this was the only answer, and I am lucky that Drew had a credit card :). I shake my head now because ALL insurance companies need to have a 24/7 policy (and most do, but not MINE)!
Team Parental unit did not know of my imminent discharge because they were given time to themselves and an afternoon nap at the hotel across the street. Patty (mom) found out only as I was wheeled out of my room. I guess I thought someone would have told her, but in typical sister fashion the other thought the other was doing it. I consumed myself with the mad shuffle of learning how to flush my PICC, manage the 13 drugs I was taking, and trying to pass a bowl movement (BM) it was forgotten. Oh and not to mention packing up my room… it was the most decorated and fashionable room– often referred to the Domitilla Dorm–. Let’s not forget that I still had the Mass (tumor, but mass sounds better according to my mom) a 11 cm hurricane in my chest creating all sorts of discomfort for me and I hadn’t shat (passed a BM) for 10 days! So, aside from my medical discomfort, I was in really good spirits because I was getting out of the hospital!
When I saw the dread on my mom’s face when she showed up to my room I was a little taken aback. Why is she so upset I thought? Well think about it… Where are we going to go? We did not have home in Minneapolis to go to. Now yes, we have a huge family but there was no stable place for me to get set up and a place for me to be allowed to be sick. This was a very difficult realization for my most-of-my-life-single-mom because she has always provided a safe and comfortable house. The feeling of imposing on people is a horrible thing to worry about as a parent just diagnosed with cancer (Like the drama effect?).
So, there we were. Patty, Rod, Jenna, Kristine, Drew, Corv (The Dog) and me all snuggled in a one bed hotel room. My slew of hospital belongings and meds found their way into the nooks and crannies not all ready occupied. Patty and Rod slept next to me, Drew and Kristine head-to-foot on a homemade floor bed, Jenna and Corv on the tenny-tinny couch. I was put to bed that night on all sorts of drugs and I might say I slumbered nicely. My mom, however, had no sleep.
Since we had passed the worst (or so we thought) of the medical stuff, now we had to beauties of dealing with the logistical side of things…
There is no Hope Lodge that allows families and dogs at a drop of a dime. What is there for a person in a time of great unknowns and despair? Family is what one turns to for a free place to stay, for unconditional support, for meals, for clothing, for laughs, for care, for everything. Yes I did have all that. But in times like these money becomes huge. I am a 25 year-old grad student. I have no money. I am white, considered middle-class, and female. My mom and Rod lived in a 5th-wheel in Austin, TX where my mom was busy selling new construction homes and Rod was actively seeking work. They did not plan on spending 25+ days in an a $200/night hotel room to house family while I was in the hospital. We pulled our boot-straps up and financially finagled-managed some shit.
Are we too prideful to ask for help? Did we have access to places like the Hope Lodge and never told? Is is socially acceptable to outright ask people to pay for things like the hotels bills, airplane rides, moving expenses, and gas? Well sometimes it is, that is why people have Benefits, but I recently decided not to have one (a later post). At the time this was all happening there was no space in our lives to think beyond keeping me alive, healthy, and mentally happy. It was literally survival mode.
Now as I think of those people staying in the Hope Lodge I am a little envious, but I know that would have never worked. We have odd habits like staying up till 4:00AM having round-table talks with my sisters. My mom has this thing about being comf (a state of being in a comfortable place). We absolutely were to be in a place that I could be sick if I needed to be sick, be loud if we need to be loud, and most importantly be able to just be.
Patty and I spent 2 the next nights at Drew’s family’s while Rod went to his son’s with the dog, and my sisters in their own beds at their dwellings. The following 3 nights were back at a hotel in Rochester. Then back at Drew’s and Rod at Jesse’s. Then Patty, Rod, and I got a hotel room at the Extended Stay because Chemo was in full force. Spent 4 nights there until I was back in the hospital. Patty and Rod kept the hotel while I spent 7 days in the hospital. I was released and we (Patty, Rod, and I) went to my aunt’s for 1 night. Then we were back in the hotel for 3 nights. Then Rod went to TX to pack up their life. I went to Drew’s for 7 nights. My mom bounced around for 5 nights. Patty and Kristine (Youngest sister) found an apartment that would allow a short-term lease and a dog in the last hour before my mom had a break-down (well it’s not a literal break-down, but in Patty’s world she was going crazy living out of the Tahoe!). Since the beginning of February I go back and forth between the one bedroom apartment that Patty, Rod, and the dog dwell in and Drew’s family home on the good nights. Nothing new for my life… I have moved a lot. I think this is a new record…. Since April of 2010 I have moved… wait let me count… 17 times, exactly! NOT STABLE or SUSTAINABLE.