Hats Off !

I have been home since Saturday morning and I figured it's about time for me to get to a new post. The pic on the left is Clemmy taking very good care of me while I tried to nap today. She has turned into the sweetest little dog. She is always at the ready to snuggle in or bring you her bunny for a good bit of fetch, or to steal cat food... that problem we're working diligently on. We've never had a dog who fit through the cat doors before!

So on to the update. I've been feeling all the effects of chemo and have had a pretty rough week all in all. Sleeping is an issue which I hope resolves itself soon! I feel tired enough to lay down where I stand but then cant sleep. Very frustrating. I've had all the classic side effects, problems with my stomach, aches and pains, fevers and chills and most of all exhaustion. I go to the doctor twice weekly which means I will be there again tomorrow so they can check my counts and make sure the engine is running smoothly. They gave me an injection to boost my bone marrow to make more cells and luckily enough I haven't had any 'bone pain', from which I suffered horribly on my last go rounds with chemo.

On Monday when I was at the doctor I spoke with a couple of social workers. These people help you get grants of money or supplies and also help you with questions about applying for social security disability. The whole process is OVERWHELMING. I've set up a phone interview with the social security people and I have filled out a few applications for grants. It has made me look at things in a new light. I've been so lucky in my life. I mean yah, I have cancer and I'm going through this but there are other parts of my life that are definitely positive.

There is my family and our amazing group of friends but mostly I'm thankful for Anita. Trapped in the hospital for a week, watching her plow through taking care of everything... work-being a top notch veterinarian, taking care or our home, caring for Hannah, visiting me in the hospital. Somehow keeping her sanity through it all. Taking time for me to ramble on the phone to her at night when I was lonely in the hospital. Even making a batch of her world famous chocolate peanut butter cupcakes for the nursing staff at the hospital.

We've been together a long time, 17.5 years really. In that time I know that I've come to take my life partner for granted and for that I am truly sorry. I cant even begin to think where I would be without her... first and foremost very alone. She has taken over the financial responsibilities as I have become unable to work and she keeps our home comfortable and safe. She is my rock. She is a wonderful Mother to Hannah and she is my best friend. I don't think there is a way to thank her enough or to really show her how I feel but I wish I could. My life with out her would be nothing. So as I fight the fight I do it for many reasons but one of the big ones is I want to stick around and enjoy my life with my partner and our wonderful daughter.

So my hat is off to you, best friend, life partner... there really isn't a good title for it, because none of them cover it. Thank you for loving me and choosing to spend your life with me.

Changes

Well it has taken me a while to get a new post done. Since my last post things have changed, life has been hectic and I feel as if I have just been holding on for dear life! The last chemo protocol (the second study drug) went pretty well as far as how I felt and side effects. I felt tired but could still function during the week of chemo. I had an exhausting weekend with fevers and aches and pains but come Tuesday I felt great. So I really had two full weeks of feeling well for a change.

In that two week period a lot happened. My wonderful family came out and installed the basement laminate flooring which looks amazing. Ed helped with the floor and cooked an amazing dinner to feed the workers, David and Matt and Kevin did the floor and the molding and fixed some other odds and ends as well. Uncle Ramon stopped in a for a bit on the way to work and offered his expertise. With Anita's hard work at prepping the room and painting and then the 'putting back together' the room is amazing. We now have a space that we all enjoy using and for once we can use our fireplace comfortably! Thanks to the people who gave up a Saturday to help us out, we really appreciated it!

Next came the news that my Father had died. He had been staying in California with my oldest sister Cat and was receiving chemotherapy and radiation for lung cancer. I don't think anyone was really expecting it, even though he had been sick. I wasn't close with my father but it still was quite the blow. My brother David really held things together and took care of all of the details and there was a funeral and wake here in Connecticut where my father wanted to buried. As hard as the situation was, it was a chance to see many people, both friends and family that I hadn't seen in 15 years or more. The wake was held on February 14th and the funeral was on the 15th, which was also my daughter's birthday. We made sure that we took the time to celebrate Hannah's birthday as well and took her to the movies Friday night.

The weekend brought the barrage of birthday parties for Hannah. We had a family and friends party on Saturday with 30 or so people and that was a blast. We are so blessed to have a wonderful family and a group of friends that meld effortlessly together and make for a great afternoon of laughter and fun. The night closed with the adults taking over the new karaoke machine and trying their skills... rather amusing for those of us who stayed on the sidelines.

Sunday's party was just school friends. Mass pandemonium. Craziness. Screaming children who lose all sense of right and wrong and which end is up. After what seemed like 10 hours, pizza, cake, snacks and present opening it was over. The parties completed and the house returned to some semblance of normalcy.

Thursday of the week of my Father’s funeral I also went to see my oncologist. In the two week time of feeling well I also started with a few new lumps and the ones I had before were getting bigger and more painful. We talked for a long time about my options and if we thought that the chemo protocol that I had just tried was working. When we decided that we were not going to continue with the second study drug I made the decision to leave that realm of study drugs and go to tradition chemotherapies. My two experiences with the study medications did not prove to be effective and emotionally as well as in many other ways I felt I needed to use a medication that was more ‘tried and true’.

My doctor felt that with as aggressive and my cancer has been that we need to be more aggressive in treating it and suggested a five day in-patient chemotherapy regimen. The protocol is called EPOCH. I get the medications as a constant 96 hour infusion given at a slow rate to minimize the side effects. So the plan on Thursday was that I would be admitted to the hospital on Monday morning to begin treatment.

This protocol is going to be much harder, in many ways. I have to be away from my family and stay at Yale for a minimum of 5 days every 21 days. The drugs will make me much more sick and I will lose my hair. The recovery time for each cycle will be much longer, leaving less time of feeling good between therapies. I will not be able to work as much and financially that will hurt as well. Anita will be the solo Mom at home and with work and school and all that is no easy feat.

So today is Tuesday. I was admitted yesterday late morning. (thanks for the ride Lyne) I had a CAT scan and bloodwork done and finally around 8pm I was started on the medications. So far so good. I didn’t sleep much but will try and remedy that today with some naps. I haven’t really felt nauseous until this morning and they added some drugs and that is better. I will do my best to keep my positive attitude and get through this week.

I miss Anita and Hannah and the critters already. So please keep up your positive thoughts and prayers for me and my family. And I will do all I can on my end to be the good patient and get better. I will also try and get back on track and keep you all updated on the BLOG. Hopefully we can get back to the shorter posts and be sure to get some humor flowing again.

Anita helped me get a picture of my new necklace last night. The picture at the top of the post is a gift from my lovely wife. Its a necklace that says "strength, faith, hope, survivior". I think that about covers it. I haven't taken it off and I look at it frequently. Thanks sweet pea. I love it.

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.