Beautiful People

Today is day four in my week of treatment. One more day to go then I get a couple of weeks off. This protocol has gone much more smoothly, other then being tired I haven't really had any horrible side effects. My days consist of a trip into New Haven, parking in the Howard Street Garage and the short walk into the Yale Physician's Building. Then there's a bit of a wait in the waiting room and I get moved along the conveyor belt of treatment. First to Pat to have my blood drawn, then to Von to get the an EKG, on to Barb or Wade for my vitals and then lastly to my nurse o' the day for treatment. All in all the process isn't too bad.

This morning as I was autopilot on the way from the car to the elevator in the parking garage I noticed an elderly woman who was struggling getting her husband out of the car and into his wheelchair. She had managed to get him set in the chair but was struggling with her bags and maneuvering the chair. I went over to her and picked up the few things she had just dropped and carried her bags for her to the elevator. The woman was so small she was having trouble pushing the wheelchair over the bumps into the elevator so I helped her and got him all set. I walked with them all the way into the building and got him parked and settled in the waiting room for his doctor's visit before heading over to my own apointment.

The woman thanked me over and over again and patted my cheek as I wished them luck in thier doctor's visit. As I walked away she bent over and yelled into her husband's ear, "see Bill, their are still beautiful people in the world." Even with the headache that I'm fighting and chemo appointment looming over me this brought a big smile to my face. And in turn it made me think that she was right, there are still beautiful people in this world.

I think thier are beautiful people everywhere and you just have to look at the world with an open mind. In my limited view of the world there are quite a few beautiful people floating about. There are the nurses who give you a hug when you walk in the door because they can see that you are having a bad day. There's the wife of one of the patients who helps the nurses by getting everyone blankets and pillows because she needs to help in some way.

There are the beautiful people who have cooked us meals and offered to help. The people who pray for me to get better, people who dont even really know me. There's our angel Peter who cuts our hair and brings a smile to our faces, he's a beautiful person. There's Mom B who sends me cards that she puts a lot of time into, cutting inspirational poems, funny and cute pictures out and pasting them into the cards to bring an added smile. She is most definetly a beautiful person. There's my Mom, who sent me card out of the blue to tell me she's always thinking about me. Mom who would do anything for me and I know it kills her that she cant do more. She is most definetly a beautiful person.

I could go on and on because we have been blessed with beautiful people all around us. My message is this -- take time to look and see the good in the world too. Yes there are a lot of bad people in this world too but let the beauty shine through.

Cliche' Anyone?

Ok, who would have thunk it? My last post started cliche' hell! Actually it makes me laugh, and I hear laughter is the best medicine. I needed to update everyone 'right quick' so we're 'all on the same page'.

I got the word this morning that the OTD (that would be me, The Original Test Dummy) is back in business. I guess I don't need to work on my test dummy resume. I was accepted 'right quick' into another study, with no delay. I went to Yale, faster then a speeding bullet, and signed the new study papers. Had a boatload of tests done and made my appointments for next week.

I will be getting chemo five days in a row starting on Monday, then I get two weeks to recover and the whole thing starts all over again. Same kind of side effects to this one, so we will see how it goes. I think that my health care team will be better prepared for the likely hood of these side effects to actually happen--- it is me after all.

So that's the latest scoop, the latest news, the word. Keep your fingers crossed for me and lets hope that I get along with this drug a little better then the last one and that I make it though more then one drug cycle before they kick me out again. I promise to try and behave!

Thanks for all the well wishes, prayers and help that you all have offered. Once again I can't believe how truly lucky we are to have such a wonderful family and group of friends.

Keep up with the cliches, they make me laugh!

Tisha the OTD :)

So Where do Test Dummies Go When...

I have been fired. Can Test Dummies post on Monster. com? No more number 16, no more Romidepsin, no more taking massive doses of potassium and magnesium. My status of "tendency to clot" has kicked me out of this study. I have officially flunked.

OK, so here is the explanation. The study that I signed up for had very strict, and I am talking VERY STRICT, guidelines as to what medications you could take in addition to the study drug. When it became obvious to all of my health care team that a port was going to be necessary for me to receive any chemotherapy long term, a 'waiver' was obtained so that I could take a small dose of coumadin while participating in this study. With my port placement came the stent in my superior vena cava and a better understanding of how easily my blood clots. Today came the revelation that I will not be able to maintain my 'clot free' status without much more coumadin then this study will allow. So therefore, without further ado, they booted my sorry ass right out of the study.

So where does this leave me? High and dry, out on a limb, up shit creek without a paddle., going to hell in a hand-basket. I am so sure we could come up with some more cliches. There was another study drug that my oncologist was considering in the beginning, so they are looking into that. The issue for me is this: I am done waiting. I want to be treated today, now, asap, pronto, yesterday... I think you get it, I am no longer willing to wait. So they are looking into things and I am waiting- regardless of whether I wish to or not, to find out where I am going with my treatments.

As angry as I am, and honestly I think more then anything right now, anger is what I am feeling, there is absolutely nothing I can do about this other than be the 'patient patient' a little bit longer. I have an appointment on Tuesday with my oncologist and I am dragging Anita along. She is SO much better at asking all of the questions that need to be asked then I am... I'm more of a "OK, lets do it" and then I get home and Anita asks me if I asked the 3,500,431 questions that I was supposed to ask. She gets the 'sheepish' -- "um, no, um... they said we start Monday though" reply. This does not usually elicit a good response.

For now, I will get on with it, get my ducks in a row, get the lead out, get a move on, get a grip(we hope) and use what energy I can muster to help with the remodeling of our basement this weekend. I will be sure an post pictures... ooh I can do some before and afters... It will knock your socks off, blow your mind, blow your top, wag your tail. Oh my, please make me stop! We are not only painting the room but next weekend 'the brothers' and 'Pepere' are installing our new laminate flooring. Are we the luckiest girls on earth or what.

So family and friends, we've hit another bump in the road but we will survive. I will be the 'patient patient'. We will see the doctor, come up with plan and we will move on and kick the cancer's sorry but. And maybe they can cure my of my cliche issues as well.

To end this post I will share with you the cliche I found that tickled me the most:

I'd rather have a bottle in front of me, than a frontal lobotomy

Patient.... or is it Patient ? ? ?

The last few weeks have been rough, there is no denying that. Weeks 1 and 2 of my treatments were a study in dehydration and nausea. Week 2 ended in an overnight stay at the hospital for IV fluids and medications to get all of the side effects under control. Week three brought with it the dreaded, yet anticipated port placement. If you don't know what a port is, I'll give a brief explanation. They insert a semi-permanent 'port' into your vein. The apparatus is inserted under your skin on your chest and the tubing runs directly into a large vein. This makes it easier to give the chemotherapy agents as well as to draw blood. It's like having beer on tap, but different! To access the port they simply poke the needle through your skin into the port, no searching for veins... its a sure shot. So this will make my life easier and the nurses lives a bit more pleasant as well. It seems my veins leave something to be desired.


On Thursday my lovely sister Kiki agreed to bring me to the doctor and stay with me while I had my fluids in the morning and then on to surgery in the afternoon to have my port placed. This is a surgical procedure so they don't let you drive-- go figure. We showed up at Yale at 9:00am for the IV fluids and I spent the morning getting rehydrated while Kiki and I picked on the nurses and talked. We walked over to the main hospital and arrived in the waiting room promptly at 1:30pm for my appointment for the port surgery. At 2:30pm they finally brought us back into the surgery recovery room. At 5:40pm I finally went in for the surgery and when all was said and done it was around 9:40pm when Kiki finally dropped me off at home. Long day doesn't even begin to cover it.


Today, Friday, they decided they needed to see me at the clinic again to give me an injection to prevent blood clots and start me on another medication. My appointment was for 1:30pm. I arrived on time and checked in at the desk. Two hours later I was still in the waiting room. At this point the nurses took pity on me-- thank you Sunshine-- and brought me back in the treatment area to see if this might move things along. While I sat there waiting the hospital's Chaplin stopped and said hi to me. He sat with me and we chatted which helped pass next hour of waiting. During our conversation he mentioned that he was always fascinated by the name given to the people waiting for care... "Patients". He remarked at how appropriate that name really is. Gets you thinking doesn't it???

Dictionary.com gives this definition for the use of the word as a noun:


1. a person who is under medical care or treatment.


And this definition for the word used as an adjective:


1. enduring trying circumstances with even temper or characterized by such endurance; "a patient smile"; "was patient with the children"; "an exact and patient scientist"; "please be patient"

So it certainly does make you think. On the whole I am a patient patient. But this week the hospital and my doctors at Yale have been trying my patience. I will continue being a patient at Yale, and I will try and continue to be a patient person. And with your continued support, love and prayers I will continue to fight the fight and beat this thing. Thank you to everyone for all you have done to make our lives just a little bit easier in this difficult time.

Kiki, keep it up with being so nice to me and I might have to let you win at Scrabble :)

Knightly Nurses

So the nurses aren't really Knights, and they don't have shining armor, but they do come to the rescue and they try and keep all the bad stuff away. They help you plead your case to your doctors when you need new drugs. And they laugh and cry with you as the days of your chemo treatments go by.

I've been through my fair share of medical treatments as any of you who know me are aware. Over time I have realized that it takes a special person to be a nurse or patient care associate on the oncology unit. Maybe its the level of compassion, taking the time to get to know the patients and to show they truly care. Maybe it has to do with our circumstances as well, its a live or die thing and we as patients come to them to be healed.

So my current team of nurses is stellar. When you can stroll into a chemo ward at 7:20am and see the smiling faces of the two nurses who are covering the early shift. Mind you these nurses are the ones who now have to find a vein and get an IV going. No easy feat. But today with some prayer -- only two tries, much laughter and some high fives the mission was accomplished. So what could have been an awful procedure with tons of pokes and whining and moaning, was actually in a scary way-- enjoyable.

They're an attractive bunch don't you think? Sunshine, LA, Diane... just to name a few... and there's Wade the PCA who keeps us going with odd facts and stories. I cant say that I'm happy I have cancer, I cant say that I'm happy I have to have chemo. But I can say that I'm happy that I get to come to Yale and have my chemo here with these amazing people.

All my thanks and more to the angels who are making this experience just a wee bit more enjoyable.

Random Acts of Kindness

I had a rough week after my last treatment (which was my first treatment...) I didn't handle the drugs very well. This week the plan with the doctors and nurses has changed a bit and our approach will be more aggressive. Our hope is that I can skip the reactions and feel well! Hey now that sounds like a plan to me.

Now family and friends have been wonderful, offering help and support. Honestly we couldn't ask for better. It always amazes me when I think how lucky we are, but we are truly blessed. Its nice knowing that if there is a need that it will be taken care of without a second thought and I can concentrate on getting better.

I wanted to share today a random act of kindness with everyone today. Monday afternoon when I went to pick up Hannah I was dragging. There is no other way to put it. I had spent the day at Yale getting IV fluids to rehydrate me and I was just exhausted. I stopped at the front desk to sign Hannah out and asked if they could just send Hannah out to my truck. After a bit of a wait Hannah came out, grumbling... because evidently Suncatchers is the best place in the world to hang out after school... and we were on our way.

Yesterday afternoon I again went to Suncatchers to pick up Hannah, feeling much more human, and there was a note on the sign out sheet that said "take Tish bag". I looked over and there on the table was a brown paper bag with my name on it. In that bag was a freshly baked, still warm, loaf of cinnamon swirl bread. The woman who saw me dragging myself in on Monday had thought about me and baked me bread.

It's these little things that never fail to amaze me. How can you say thank you enough when these things happen. Getting that loaf of bread picked me up and made it easier for me to face heading back to Yale today for the next round of treatment. So I thank you, Chris, for taking that time and thinking about me and baking me one supreme loaf of cinnamon swirl bread!

So it begins.

Today I started my new 'chemo' program. I started at 8:30 this morning and its around 2:30 in the afternoon and I still have a few hours to go. I am lucky number 16 in a drug study program for my bizarre type of cancer. Well I am lucky number 16 in the worldwide study and lucky numero uno in the Yale New Haven study. The drugs are flowing and we hope they will do the trick to send me into remission.

Lets go back a bit... I decided on the title of my blog because of my participation in this study and because of my status as 'test dummy' to my older siblings when I was a little kid. I hold no grudges about this. I was younger then them by a few years and when they came up with a new idea they needed a willing subject. When you're the much younger sibling you'll do anything to be able to "play" with your sibs so I agreed. I lived through it! And now we have a few really good stories to reminisce about. "Remember the time we launched Tisha off the stone wall in the little yellow sled".

Now I am an adult and I have once again willingly submitted to being used as a test subject. I have a type of cancer that isn't all that well known. SPLTCL. Its a type of lymphoma and this is my second go round with it. I was in remission for 3 years. We were referred to a doc at Yale who has done a bit of research in this type of cancer and her thoughts are that this is what I need. I've signed all the forms and I've undergone all of the testing and finally today the drug is flowing.

I thought this blog would be a good way to get through this time. Keep my friends and family up to date and let them see where things are. I've always used humor to help me get through things like this and I figure this is no time to stop. So... hang on... and I will take you on this ride with me.

*** the picture at the top is Clemmy on Christmas day... aren't we all jealous of the way they can kick back... I so want to be her right now, curled up on the couch with the fleecy blanket.