Bad Bad Tisha

Alright, I admit it. I've been seriously lax in my 'blogging'. Life has been hectic to say the least. As per my last post I did have my stem cells collected. Turned out that I am pretty good at producing them and they collected all they needed and more in one fell swoop. I actually broke the record for the most stem cells collected in one day. Hey, gotta take your props where you can.

I've gone through some more chemo since the last post as well. I had a protocol they call DICEP which was some heavy duty stuff. They actually wipe you out enough with it that they have to do what they call a rescue and give you just a few of your stem cells back to help you recover. That protocol was four days in the hospital for administration and then another five days when I got really sick afterwards and had less than 0.1 white cells. I ended up needing a number of transfusions of both whole blood and platelets to help me through the recovery process. All in all it was rough, harder then I had anticipated.

So we've gotten through those hurdles and this week brings 'tests'. My last PET scan showed that I still had some activity going on in both of my legs so that's why we went with that heavy duty chemo. I am now scheduled to have another PET scan tomorrow evening. I go see my Doc on Thursday morning and get the results and the plan. If there is still activity I go see a new Doc and see about radiation. If there is no activity its on to the autologus stem cell transplant. So this is decision week and stress levels are high. Keep your fingers crossed for me please.

On a more upbeat note... we bought a new pop-up camper! One of our favorite things to do is camp. Hannah loves the freedom of riding her bike all weekend and meeting new kids. We love to watch and to sit in front of the fire at night. My family is all into camping and when the timing is right we all go and have a blast. I'm not sure I will get to one of the big family trips this summer but I'm not giving up hope on it! We tried the camper out this past weekend and we love it. The weekend proved to be less the cooperative and rained on us but we still managed to have fun.

Clementine got to experience camping for the first time and proved herself as a first class camping dog. She didn't bark or misbehave. She hung out in the camper while we went to play Bocce and spent her time spying on the neighbors instead of being a puppy and chewing something up. And she slept as soundly as ever while her Mom's laid there awake listening to the neighbors dogs whining all morning long. All in all, we couldn't be more proud!

So that is that, the update. Life is moving right along! Hannah is finishing up with school this week. We haven't planned any summer camp in hopes that I will be around most of the summer and we can hang out. Our pool is open and ready to go. My sister is off for the summer and is willing to help out when needed which is a huge relief to us. Anita is working as hard as ever now that she's a partner. She somehow manages to keep us all together, its super powers I think.

I promise to try and get myself off the bad dog list and post more often. Thank you to all who offer their help, time and support. We truly are blessed to have family and friends as wonderful as you all!

The Next Step

The picture is of the roses and calla lilies that Mrs. Bauer sent to me during my last inpatient stay. They were so beautiful and made my stay here a bit more pleasant. Not to mention I got a million compliments on them! Thanks Mom B - you are an angel.

This week has been mostly non eventful so far. My latest 'fun' side effect of my chemotherapy is that my eyelashes are falling out. Did you know that they really do play an important roll in your life? They keep dust and stuff out of your eyes. Well with the lack of them and the remaining ones falling into my eyes, I look like I've been on a crying jag - and I haven't! So they started some eye drops for me today and so far its been better - so I am not winking at you --- its the lack of eyelashes :)

Well onto the topic of this post. My next step. I found out recently that my next step is to have my stem cells collected. I was surprised that it was happening so soon but at the same time if this is the time and it moves things forward to being in remission quicker... bring it on. So I got the low down on the procedure and I'm a bit more nervous about this then I have been at anything else they've thrown my way.

I will be discharged from the hospital for this cycle tomorrow, Friday. On Monday I start daily Neupogen injections. These are given to stimulate your bone marrow to produce stem cells. Normally I get one injection of a drug like this to stimulate my bone marrow to make cells and I suffer from bone marrow pain for two days. So getting it daily makes me think there is going to be a lot of bone marrow pain in my future and that prospect is daunting.

The next step which starts the following Monday is the actual stem cell collection. Anita will bring me to the clinic at 7:15am and I will have a blood test done to see where my stem cell levels are. If they have achieved the desired level I then get to go to my favorite place in the whole world --- Interventional Radiology -- to have a central line placed. They use this line to collect the stem cells. Its called apheresis, and its a lot like dialysis... the take blood out slow and filter the cells they want out and then give me the rest back... so I get an in and out kind of set up! This goes on daily for up to six days. I won't have to be there that early every day at least but it will be five hour days.

Side effects of that are being really tired and sometimes needed blood and platelet transfusions. I also cant drive that week at all. So I will be asking my friendly chauffeurs for their help. I think my rides in, in the mornings are covered by Anita and Cyndee but there will be afternoons that I will be begging rides home. Thanks everyone for always being so willing to help.

The week after that I will get a PET scan and the doctor will decide at that point if we go ahead with the transplant or if I need some more chemo first. But any way I look at that I'm getting an extra week off between treatments so I'm taking that as a good thing! I have to take the good things where I can.

So there we are people. I'm a wee bit apprehensive about the next steps. I worry, I feel guilty that I'm not more "here" for my family. But we will get throught it and I know that our friends and family are always there for us.

AND as a final note... Hey Sarah... I beat you in a new post girl! Come on... lets see it... post baby post!

My Head

So first and foremost a big thank you to all of you who purchased skullcaps for me and those who took the time to knit me some hats. My head is well covered and I have more choices then you could imagine. Some people have asked for a fashion show but I don't think I could do that here. I have toooo many skull caps to show them all. I will include some pictures that we've taken of the booty.

This is how I've been storing them for easy 'choosing'. I have a skullcap for every mood. Some more amusing then others. Some people went with the more elegant look. Some for fun. And some for the shock value. I love them all. I took a bunch of them to my family gathering for Easter and somehow I convinced all of the adults to try one on and we took a group picture which I will share with you as well.

I love the knitted hats too. So I have a hat for every mood. Friends from every where have sent things and I was astounded! Anita, Hannah and I loved opening the packages and seeing what people chose to dress up my head. So again thank you everyone for the outpouring of support in the form of head gear for me!

This is the picture of the family in the head gear with me... Even got Memer'e and Peper'e in there with us. And Clemmentine and Tucker. I have a great family who was willing to help me show off some of the skullcaps. Clicking on the pictures gets you a larger view so you can see more details.

So now for the update. I'm here in the hospital for round 3 of chemo and so far things are going okay. I got started very late on my drugs which will make my week a day longer. This did not make me happy. I also have a double room and I miss my privacy. Its not awful but it makes for tougher going through the day. The drugs and I are getting along okay. I really hate the way the steroids make me feel but without them the chemo drugs would be making me much sicker. So I guess I have to suck it up.

Anita and Hannah will be in to visit me later and will bring me dinner. The food here isn't terrible but food from the outside sounds good today. Thanks for all your well wishes and cards. And thank you to Mrs. Bauer who sent me the most beautiful flower arrangement. I would send you a picture along here but I have no camera with me here. Either way they are stunning.

Hairless wonder

Hey all, I know its been a while since I've posted. I am in the second week of my new chemotherapy and its going okay. The first cycle worked well and I have much smaller "bumps" and less pain. So yah, to this protocol. The complications... from the first cycle landed me back in the hospital with fevers and low blood counts but we're hoping to avoid that this time around. No more hospital stays then necessary.

So the big news right now is that my hair is gone. It started to fall out with gusto and I asked Anita to just shave my head. Losing your hair is no fun. Its down right gross really when it starts coming out by the hand fulls, literally. So now the story is skull caps. Our dear friend Peter sent out an email suggesting that people pick me out various skull caps to keep my head decorated. I'm waiting with bated breath for them to start to arrive. I know ya'll are quite adventurous and I'm wondering what I'll be wearing in the near future.

Anita took this picture of me with some temporary hair and I though I would share. So now you see why the skull caps are needed. Thank you to all in advance for placing your orders. I am really excited about the whole thing.

So finally in this short post I ask one question.... Why no comments. I want comments people. I love the comments and it makes it more fun to post after I get to read your comments to my posts. So please, please, please leave me a comment!

Thanks to all for all the well wishes and prayers. I really do appreciate them!

Tisha

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.