I have a belly full of meds and it's really pretty yuck. Being out makes up for it totally though.
This morning started off a living hell. I woke up and my first thoughts were of Starbucks. Mmmmstarbuckssssss.
I knew today was discharge day, so I was going to be strong and go get my own latte. You know, being the independent, stubborn patient that I am. I was in the hospital for four days and had not left my room except to take a shower one day, so I was determined to get out.
It was then that I realized that I had the most massive headache of my life. A bad temple throbbing and sinus killing headache all down my neck even - a whammy. I called a nurse, and later, called again, finally on the third try during the shift change, and 45 minutes later, she comes in to find me fetal position and crying, bald head in hands.
Immediate we move on the Darvon, a narcotic. I can barely take it my hands were so shaky.
20 minutes later, I'm high, I have a killer headache, and I'm nauseated (still am - I think it's the new antibiotics). So she comes back with an IV of anti-nausea, which I refuse. I just need to take my meds with food. So then she offers me some morphine or some other narcotic.
Morphine? It's a headache, not a foot amputation.
My breakfast finally comes (with the sh*tty hospital coffee), and then the nausea subsides. Ah the power of peaches and a little oatmeal, aka nature's broom.
I am so wimpy when it comes to meds. I'm a total lightweight, so I wonder what morphine would have done to me. My chance to get way high and I blew it. Eh, I still choose oatmeal over drugs anyway. Take that Nancy Reagan.
I'm glad to be home, but found out today that I will for sure need to have radiation before my bone marrow transplant (which also goes by stem cell transplant, fyi, for those in the know.)
I was bummed to find out that I also have yet another sibling who is not a match. Only Sis #2 and Bro #1 have their bloodwork pending, so please say some be a match prayers. Either that or register with your local bone marrow donor registry. I'm a blood donate pimp, I swear.
I've been scared about the transplant thing, but need to get all warrior on it as well. So, if my leukemia is Dracula Blood, what should we call the bone marrow transplant?
I'm glad to be home (home being a family friends, but home nonetheless).
I can do this. Home reminds me that. So do you all :)
Today your assignment is:
to fully enjoy your flush toilets. The thrill of a bathroom with a door that closes, locks even, and to be able to pee and not have someone measure the outcome of said pee. Or walking in on you regardless of the "privacy light."
So the plan should be, lock the door, spray some lovely smelling spray in your can, pick a magazine, talk on your cell phone or sing out loud if you want.
It's your bathroom and you'll sing if you want to.
Don't forget to flush. And if you sprinkle when you tinkle, be a sweetie and wipe the seating.
Ok, forgive me. I'm still a wee bit high.
Posted by debutaunt at December 1, 2005 09:51 PMJust got off the elliptical. Started off with the minimum today, 30 minutes, but it is so on! Off to enjoy some quality time in my bathroom. ;) Don't worry about a thing sug (what my Pop calls me, and it's pronounced shoog, like the first part of sug-ar)everything will work out fine.
Posted by: Rachel at December 1, 2005 10:36 PMAnti-vampire blood? Hmm.. Garlic blood? Sprinkle thine self with Holy Blood and vanquish the dark lymphocytes of the night!
I'm sharing a motel bathroom this weekend so I'm not sure I'll be peeing in private either. If I am able to close the door, I shall tinkle for you Deb!
Millions of hugs. You're my sassy guru and I think you're directly responsible for my decision to get my hair cut like Aeon Flux tonight. If you can be bald and wear feather boas, I can stop looking like a soccer mom. :)
Posted by: Rebecca at December 1, 2005 10:43 PMhey.
just ate my oatmeal...
I'm on the bone marrow transplant registry...
I'm only sayin...
Well I will say that Christopher enjoyed his toilet time today. I heard this loud singing of Feliz Navidad when he was supposed to be in bed and came running to see what he was doing. He was busy doing his business and singing. He says - See how loud it is Mommy? Can you shut the door so it will be louder? I couldn't help but laugh. BTW when he sings it is Feliz Da de Da not Feliz Navidad. Gotta love it! Glad your headache went away and you are quasi home again.
Posted by: Julie at December 2, 2005 09:01 AMI put my diary code in here in case you get bored and decide you want to know more about your cyberstalkers. :)
Meantime, I'm going to figure out what to do to get on marrow registries. Who knows, someone might need a little me in them. Which sounds really dirty. Sorry. :)
Posted by: Angie at December 2, 2005 09:47 AMSorry for the long post - but I hope this helps for anyone reading this that has questions.
National Marrow Donor Program Website:
In the Houston Area, it is the Gulf Coast Regional Blood Center:
Gulf Coast Marrow Donor Program Mission
To educate and register donors for the National Marrow Donor Program Registry, to promote awareness of the life-saving need for marrow or peripheral blood donations from adult donors to patients awaiting transplant, and to raise funds for donor testing, typing and recruitment.
Why Join?
It is estimated that more than 35,000 adults and children could benefit from a marrow or blood cell transplant each year.
Patients diagnosed with leukemias, lymphomas or other blood cancers make up approximately 85 percent of transplants facilitated by the National Marrow Donor Program. The remaining patients undergo transplant to treat a variety of immune system and inherited disorders.
In 1991, Gulf Coast Regional Blood Center was recognized as an accredited donor center for the National Marrow Donor Program (NMDP), educating and recruiting more than 80,000 potential donors who are willing to donate marrow or blood cells to help save the life of anyone, anywhere in the world.
There is a need for more potential donors, especially from diverse populations. Because tissue types are inherited in the same way as hair or eye color, a patient’s best chance of finding a match is a brother or sister. Only 30 percent of patients have a suitably matched donor in their family. The next best chance of finding a match is between people who share a similar racial and ethnic background.
The NMDP’s Registry of more than 5.5 million potential volunteer donors and more than 40,000 cord blood units is the largest and most diverse in the world. Even so, the Registry is not yet diverse enough to assure all patients an equal chance of finding a match. The NMDP continues to add new tissue types to the Registry through targeted recruitment of underrepresented racial and ethnic groups.
How Do I Join?
A person of any race, ethnicity or gender who is 18 to 60 (up until 61st birthday) years old and who meets donation health guidelines can become a volunteer potential marrow or blood stem cell donor. All potential donors will:
*Be given information about the marrow and peripheral blood stem cell (PBSC) donation processes
*Complete a brief health questionnaire (see below) to verify your eligibility to join the Registry
*Sign a form consenting to have your tissue type listed on the Registry until your 61st birthday
*Provide a small blood sample, which is tested to determine your tissue type
Heatlh Eligibility:
Eligibility Guidelines
Age:
All donors must be between the ages of 18-60 and in good health.
AIDS:
If you have or are at risk for HIV (AIDS), you cannot become a marrow donor.
Asthma:
Serious asthma (poorly controlled, requiring hospitalization, etc) is not acceptable.
Back problems:
Back problems (sprains, strains and aches) are common and may not interfere with a marrow donation. Serious back problems, particularly those requiring surgery, may be a cause for deferral. If you have significant back problems - herniated disc problems, for example, consult your donor center.
Blood pressure:
Elevated blood pressure (hypertension) is acceptable if controlled by medication.
Cancer:
Cured local skin cancer (only simple basal cell or squamous cell) is acceptable. Cervical cancer in situ is acceptable. All other forms of cancer are unacceptable.
Diabetes:
Medication-dependent diabetes is not acceptable. Diabetes controlled by diet is acceptable.
Epilepsy:
More than one seizure in the past year or multiple seizures are not acceptable. Epilepsy controlled with medication, when there has been no more than one seizure in the past year, is acceptable.
Heart disease:
Prior heart attack, bypass surgery or other heart disease is not acceptable. Mitral valve prolapse that does not require medication or restrictions is acceptable. Irregular heartbeat not requiring medication is acceptable.
Hepatitis:
Hepatitis B surface antigen is not acceptable. Hepatitis C antibody is not acceptable. Any other hepatitis history must be evaluated early in the actual search process. Hepatitis vaccine is acceptable.
Lyme disease:
Asymptomatic Lyme disease is acceptable if the donor has been treated successfully with antibiotics. Chronic Lyme disease is unacceptable.
Malaria:
Malaria more than three years ago is acceptable. If the volunteer finished a full course of antimalarial drugs more than six months ago, he or she is acceptable.
Obesity:
Body Mass Index is used to evaluate weight. Donors may be deferred if obesity presents donation risk. See the Donor Weight Guidelines for more information.
Organ or tissue transplant:
Heart, lung, kidney, bone or other organ or tissue transplant recipients are deferred.
Pregnancy:
Marrow cannot be collected at any time during pregnancy. Women who are pregnant are temporarily deferred.
Sexually transmitted diseases:
Any history of sexually transmitted diseases must be evaluated early in the actual search process.
Tuberculosis:
Active pulmonary tuberculosis within the last two years is not acceptable.
Immunizations:
Immunizations are acceptable, excluding investigational vaccines. Some immunizations require a waiting period before joining the Registry.
*hugs so hard*
Its often times hard for me to read your entries, because they bring up a whole host of memories from a time that was very hard and heart breaking for me. As I've said before, someone that is very near and dear to me battled (and won!) the fight you are now engaged in.
He too had to have a bone marrow transplant, and full body radiation...*hugs even more*. None of his family or myself was a match, but he found a donor in pretty good time. I am crossing my fingers that one of your family does match, but have faith that a match WILL come if they don't.
You ARE doing this.
Rock on Uma...rock on!
Posted by: Lucky at December 2, 2005 09:14 PMI like to think that the bone marrow transplant is the Great White Hope. *Saying another prayer for you.*
Posted by: Christine at December 4, 2005 02:18 AM