Pictures of new drugs

Here are some pictures of the new drugs taking over the IV poles.  Today I'm a little sick, but the anti-nausea medications seem to be working...just waiting on my next dose to feel a little better.  Once I'm feeling up to it I'll write a post about our first F.E.C. experinece.

 All of my medicines hooked up.  If you notice the Epirubicin is really bright red...

 If you look closely you can see the Epirubicin flowing though the catheter against my white shirt.  Lovely.

Oh well, I'm off to rest some more.  Have a wonderful day!

Girls can't resist sparklys!

Cody's brother, Brady, is getting married tomorrow and it took me forever to find a hat to wear.  Everyone wears clothes so they are easy to find, but not everyone covers their heads so it took a long time to find a hat.  At a "specialty" hair loss shop they wanted me to wear a velour turban.  WHAT????  It was really awful.  Not only was the material terrible, it made me look like I belonged in a nursing home.  I'm surprised it didn't smell like mothballs.  Anyway, here is the hat that I found.  It has sparklys!!

Good News

Yesterday I had my final round of Paciltaxel and RAD001, and I had an ultrasound and biopsy to find out if the past 11 weeks of treatment had made a difference in my tumor.  It has made a HUGE difference.  My tumor has shrunk from 1.5 cm x 1.0 cm to less than 6 mm x 2 mm.  The radiologist could barely get any cells to donate to the study and for the pathologist.  The pathologist was unable to detect any active cancer cells in the sample!!  YEA :)  Needless to say Cody and I are thrilled.  It is really exciting to see that all of our efforts are paying off, and we are really happy to see that our confidence in my doctors was not misplaced...they DO know what they are doing.

Number 12 is in the books.

My infusion therapy nurse.

Cody and I after it was all over...








BRING ON THE F.E.C.!!

One More

Yesterday I finished my eleventh round of Taxol and RAD001, only ONE MORE LEFT!! YAHOO!! Cody and I can finally see the end of the chapter. The exercise that I did last week did not make me more fatigued that usual the day after chemo, but it did give me more energy. Today is a rest day, and it is raining and gross outside so it is the perfect rest day. Last week I went down to Town Lake and walked then ran, then walked then ran, for approximately 5 miles from Mopac to South 1st Street. Then on Saturday Cody and I rode our bikes on the veloway, a closed 5km bike track in south Austin, for 20km. So I am ready to do the same biking distance as the triathlon, and the run is going to be more walk then run; but that is okay. My goal is to finish, not set any speed records. Saturday we also went to the nursery and bough sweet grape tomatoes and okra plants. We’ll see how the okra does in containers. I need to get some basil and thyme for my herb garden, and then some flowers. You can’t have a garden without flowers. Tomorrow I see the eye doctor in the morning, either the chemo has messed up my eyes or they are just naturally getting worse. I’m blaming everything that goes wrong on the chemo…hot flashes – chemo, cat barfs – chemo, rain – must be the chemo. The sun should be out so after my appointment I plan on spending the rest of the day working in the garden and getting everything planted. I’ll post pictures for those of you still waiting for spring.
Here are some hats that I received in the past couple of weeks --- THANK YOU!!

HAPPY BIRTHDAY DAD!!

This picture is from dinner the night before the Texas Man Triathlon in May 2009.

Babbling

Spring Fever is really starting to set in. It is nice and warm outside but I’m not supposed to sit in the sun. When it is cold and nasty out, it is much easier to follow directions to rest and stay out of the sun. Yesterday I was able to spend time outside walking and running, and now I’m writing on our back patio trying to warm up in the sun from being in a freezing cold doctor’s office this morning. This morning I had to go see Dr. Mills for an exam before I start F.E.C., it was really nice to see a familiar doctor. Even though it was a pelvic exam, I wish all of my doctor appointments went so smoothly. I was finally able to reschedule my MRI at a decent hour, 3:30 in the afternoon, so I can have my port accessed before the test. But I did have to fight with the scheduler to get a time that was within reasonable business hours, meaning not late at night or early in the morning. I am frustrated with the lack of overall understanding that occurs between patients and the non-medical staff at the hospital. I understand that they talk to and see very sick people everyday, but give them some kind of training or something. The hospital is a micro society and there are some people who are good at their jobs, enjoy them (or at least pretend), and there are those who are terrible at their jobs and hate what they do. I once heard two secretaries in the bathroom talking about how much they hated the “smelly patients.” Now I’m not sure if they were referring to specific patients or if they think all patients are smelly and deserve ridicule; but they did hurt my feelings. I don’t want to be a smelly patient, or a difficult, pain in the ass patient but I will be in order to get my needs met. The funny thing is that I’ve heard worse stories about the private cancer hospitals in the area, than MD Anderson. The stories I’ve heard are all absurd. As patients we tend to get cranky at everyone and everything, and if our schedule gets messed up then look out. At least we only have three more weeks that we have to be at the hospital every Monday – YEAH!! I am almost shocked that my twelve weeks of taxol and the infamous study drug RAD001 are coming to an end. I only have two more treatments. It certainly does not feel like I have been taking chemo for ten weeks; except for the lost hair, rash, acne, and chemo pause. The chemo pause symptoms get worse each week, and are probably the most annoying of all the side effects; because I know that in another fifteen or twenty years I’ll have the same symptoms again, for real. Now I’m focused on getting ready for the next group of drugs, fun, and training for the triathlon on April 11th. I know that this is not a great place to talk about training, but I may turn it into a gardening/working out blog with cancer stuff on the side. Let me know what you think.

NO More!

"No you can not start an IV to inject me with contrast dye."  It is nine o'clock at night on a Friday at MD Anderson and I've just been called back for an MRI...really it is late at night, the hospital schedules MRI's until eleven.  I have had it. I want to go home. I miss Cody and Ophelia.  I’m tired, I’m cranky, they can’t access my port…I am done.  The nurses in the MRI area are not aware that the infusion area, where I can get my port accessed, is closed.  They sent me up to the eighth floor to get my port accessed; the eighth floor was dark and completely empty, except for the guard sitting in the stem cell transplant waiting area talking on the phone.  Why did I go through surgery to get a stupid port if none one can access it?  This is the last straw and I am out of here.  This MRI is not an emergency, and if they want to do one then the hospital can damn well schedule me when they can access my port!  I’m sick and tired of being stuck, prodded, poked, poisoned, and generally humiliated. I’m sick of filling out the same freaking paperwork each time I check-in for a new appointment – is it so hard to share information in the same hospital?  I’m really, really, really getting sick and tired of being at the hospital.  Cody and I know every shortcut, every elevator, every floor (except for the seventh which is reserved for Genitourinary Cancer) of the Mays clinic; and we know the twists, turns, and hidden waiting areas of the main hospital.  We know that the walk between the Mays clinic and the main building takes twenty minutes on the sky bridge, and if you can’t walk they will shuttle you in a golf cart.  My research nurse, Julia, said that the last few weeks of taxol are when patients get really sick of the hospital.  Well I have finally reached my limit.  I need a vacation.  If I didn’t know that I would have to start all of this over from the beginning I would just stay home.  Unfortunately I can’t stay home, but I don’t have to have an MRI tonight.  The MRI can wait until I’m back in Houston for my next chemo treatment, and when someone is around to access my port.  Up until this moment I’ve been good and let them do whatever the hell they want to me.  I’ve shown up for all of my appointments on-time, never complaining that they are redundant or that I don’t want a particular test.  Now I’m done.  If they want me to do more crappy tests then they are going to do them on my terms.  Everyone has one little thing that causes them to rebel, their proverbial nut to crack, and I guess mine is the idea of being stuck with one more needle.  Small wonder since I hate needles so much I made it the title of my blog.  Monday I go back to MD Anderson for my tenth taxol treatment, only two left.  We only have three more weeks in a row that we have to be in Houston every Sunday, then at MD Anderson every Monday.  Once April begins I only have four more chemotherapy treatments, but these are every three weeks – yeah!  The drugs they will give me are much harder on my body, but I get to be home more than five days out of the week.  The tunnel is still really long and dark, but there is a flash of light in the distance.

Overwhelmed

I'm starting to feel very overwhelmed with all of this stuff.  I am tired of all of the trips to Houston, not having any hair, feeling crappy, not having a clean house, the testing, the pokes, the prods, the constant bloody nose...I am just sick and tired of it all.  I am tired of the cold weather and not being able to be outside, and my body being too tired to workout.  I find it hard not to talk to anyone all day long, until Cody comes home from work, the isolation is depressing.  I know that there are only seven more chemo trips to Houston (three of Pacitaxel and four of F.E.C. Fluorouracil. Epirubicin. Cyclophosphamide), but now I have to go on Thursday to get and MRI of my head because of my sinus problems so I have to spend more time away from home.  And after all of the chemo I start surgery preparations, possible radiation, and then more surgery and reconstruction.  It's frustrating and the trip to Houston is exhausting.  I don't think I ever want to go to Houston again once I'm done with all of this.  That old adage your parents used to always tell you, "Life is not Fair" seems to have hit me squarely in the forehead, and no matter how hard I work at getting through the first smack in the head something else comes along and smacks me in the head again.  Sorry for gripping, I know you don't read my blog to listen to someone complain about how hard it is to get through all of this crap, and how unfair it all feels.  This weekend I was supposed to plant my garden, so that we could at least get some fruit on the plants before it hits 90 and the plants stop producing.  This year Cody and I were going to travel.  We were going to go and visit Jen and Mike in London, maybe go to Paris, go explore the Big Island with Clyde and Geri, go skiing in Sunapee...
Today I start working on getting my muscles prepared for my mastectomy in a few months.  I need to strengthen my back, abs, and other core support muscles so that I can recover more quickly from surgery; and hopefully not get lymphedema.  Tomorrow I have another lunch with the Pink Ribbon Cowgirls, then its off to Houston for the weekend.