VP’s...First let me say that it’s just a hoot to have Michele here visiting. Laughter is such great medicine for Brenda and I. I was sure you could hear that infamous laughter from Brenda even back in New Jersey and over in San Diego. I was hoping we wouldn’t get kicked out of the apartment. She has such a quick wit that we were howling and flashing pictures of her antics about 5 minutes after we got to the apartment.
So let me get to the Stage 2 / Part 1 medical “bullet.” Today’s visit to the clinic was to prepare us for what radiation therapy was all about. Because they truly believe an informed patient can better manage their physical and emotional response to this kind of treatment, we attended a mandatory class that really walked us through the steps to take care of yourself through the course of treatment and they explained the worse-case side effects of the treatment and how to handle these with their constant help. The good news is that Brenda is closely monitored by everyone involved in her treatment on a daily basis. They really want to stay on top of the side effects of the radiation. Since everyone responds differently, and the side effects depend on exactly what areas are radiated, they are not able to say how bad all this will get. There is no doubt however that this will be a rough stage. Remember that she’s will have more chemo so that brings on the side effects quicker.
Then all the radiation physicians came in and examined Brenda’s neck and sinus cavity. They had to put the scope into both sides of her sinus area but she handled it very well and it didn’t seem to be as bad as those early scopes she got. They projected it up on a big screen for everyone to see, but since the tumor had been removed, it looked like healthy pink tissue to me...I didn’t see any more gross aliens in there screaming to get out or cause more problems!! Then they went to a planning office and looked at the scans and what Dr. Swartz was proposing to treat and how.
After that Dr. Swartz and his intern came in and we talked in more detail about what areas they had to treat. The side effects were again discussed and we asked some questions. It’s quite evident that they were going for the complete elimination of all cancer cells that where still lurking in Brenda’s neck, sinus cavity, and that small lesion in her brain.
Stage 2 / Part 2 will begin on Thursday when we see Dr. Hong who will outline the chemo side of this Stage. Using chemo WITH radiation will be used to enhance the cancer destruction process. We’ll have to let you know what that will look like after that meeting. What we heard was chemo is going to be one day a week for the duration of the radiation treatments which will start on June 22nd and will end on August 10th. That’s 35 radiation treatments. The first day is not an actual treatment day but a dry run to ensure that all the parameters are correct.
So there you have it for today. This next stage will be very challenging and we continue to ask for your positive energy and prayers. The blog and your comments are just such a fantastic light that shines through the rough days we’ve had and the rough days ahead...but we know this will all eventually end with the CURE...Good as new!
Nurse Dee and a very Brave Chemo-sabe
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We hope our good vibes and some extra positive NJ energy via Michele has made and continues to make its way to y'all there in Houston.
ReplyDeleteWith each day that passes a new day and 'good as new' is all that much closer...
We heard here in NJ of the antics you three got up to last night - what Michele was remiss in providing was an update for us VPs - she told us she couldn't wait to hold(?) / feel (?) that bald (thing?) with rubble.
The question is Michele - did it live up to all the places your (wild) imagination might have taken you !!!!!!!!
We hear more fun is round the corner tomorrow - lets hope Michele gives us VPs the type of detailed update that we have come to expect and rely on from our very own and special Nurse Dee !!!!
Big hugs coming your way :)
xx
Okay, okay here is my update.
ReplyDeleteI get back to Houston early tomorrow and then we get to spend the day together before I head home on Thursday.
As for "rubbing the stubble" - it was all I imagined and more. It was the second thing I did after they met me at the airport - hugged Dee and rubbed Chemo sabe's head - then she got a big ole hug.
I must say, Chemo sabe has a very nice bald scalp. Not one of those wrinkly, crinkly ones. Her's is rather smooth (she did just shave it) and well rounded. As I type this I cannot believe I am analyzing (analysing for the folks from OZ) her cranium, but that's just me.
Anyway, I was actually amazed at how well she looks. She actually looks healthy; healthier than me in fact. She does not have that ashen, gray "I have cancer" look at all. Except that she has the PIC line (Karen did I get this right PIC line?), you would not know she was ill at all. Rather you would guess she was just one of those radical gals that likes to shave - - - their head (down girls).
We had some fun laughs last night and I intend to carry that over tomorrow.
I did pack two new caps so we could usurp the San Diego bonnet Jackie delivered. One problem. One of ours was the pink NY Yankee cap - cool right? I thought so. The other was a khaki cap with Chemo Sabe written in Pink - again very cool. At least Karen and I thought so. Okay, I thought so, Karen had different suggestions, but guess who did not listen? Anyway, who knew chemo sabe lacked a pink oriented wardrobe?? I totally missed that.
The SD cap is a very cool shade of blue and well we all know blue goes with everything!! I think we lost the cap "usurping" contest. San Diego rules.
Karen I promise to listen to you next time! I'm thinking a cammo hat with "KILL CANCER" embroidered in BLACK! Butch enough?
I want to take one minute to be serious. I'll wait a moment for Kim and Wendy to stop laughing before I resume. Brenda and Dee - you both need to stop laughing as well. I can hear you all the way in Dallas. Okay ready?
I feel so lucky to have spent some time with both Dee and Brenda, but more importantly I got to see first hand the wonderful benefits of this blog. The videos, the one lines, the photos, the well wishes. We re-read some of these last night. For anyone on this blog that has seen Chemo sabe smile and heard her subtle laugh, you will know what I mean except you may queswtion my use of the word subtle. She reads the notes and just smiles a smile that lets you know "everything is going to be alright". When she laughs, it makes you smile and concur. That makes Dee smile as well. One of those moments when you know you have been thrown a freakin' curve ball, but you also know you can hit it out of the park - that kind of moment. Wendy to make this a bit more relevant for you, it is kind of like finding the purse that EXACTLY matches your orange loafers - that kind of moment. Those are the instances where the smile turns into one of her hysterical bellows that are difficult to contain. Now we all know she can bellow when she laughs. We think it is a good thing. The neighbors - not so much. But they too will learn. This VP is helping!!
If there is one thing I have come to appreciate in my very short time (so far), it's that I have to send a note, provide an update, and keep these gals in the loop. Imagine if we all did that. There are 62 members on this blog. That would be powerful. Perhaps we can even alternate days - Brenda would be exhausted reading all the updates, but I think ya'll get my point.
I am not really sure how Dr. Hong is going to document this study when he writes up Brenda's case. My opinion, and I do have one, is that her cure is three parts: Medicine - a big part; Mind - oh man she is in the right place; focused and kickin butt. The third part is people that matter and want to be part of making Brenda "better than new" whilst also messing with the study and providing some very interesting "study" variables.
Ya gotta love messing with science.
I too got to witness the great effect this blog has on Brenda and Dee. I've talked to a lot of seriously ill patients over the years and one of the things that bothers them most is the isolation.....the feeling that they are alone with a terrible disease. Brenda is far from alone, but at the same time there are many people who watch from the periphery and don't check in. Many folks just don't know what to say and are afraid they will say the wrong thing. For all of those people, you need to know that Brenda is an understanding soul. Not saying anything is far worse. Some days are very serious and scary and other days are laughter filled. Both are a necessary part of her journey. So, I agree with Michelle, check in. Say Hi! Even if you just blog that, "I'm out here and thinking about you." It's so very important. After all, we can't expect everyone to be a Marshall Vic!
ReplyDeleteVic
I was with Dee and Brenda and Vicky last night on Skype and it was a very difficult night for understanding all of the why's and what if's. We laughed, we cried, Brenda and I made up medical words like we always do and then we crack up at each other. We need everyone to pray hard during this next 35 days of radiation and chemo..Faith and Trust with all of love in my heart. You both are so loved
ReplyDeleteI think we need to come up with a "giant skype" so we can all be there together laughing and interacting... oh yes don't they call that a party... or at least we should all get those flip videos & do our best stand up lines!
ReplyDeleteLots of Blessings, Love & Positive Energy Always
Cathie
Just want you all to know that Dayna and I check in almost everyday, but everytime I go to post something, I can't remember the damn password I used and have to spend too much time resetting it. Sometimers has hit!
ReplyDeleteToday, Dayna and I get to do MY favorite thing, We're taking the motorcycles out for a ride and little lunch. She laughs at me because she can see the huge smile i have on my face in my mirrors. My point is, everyone has to find that one thing that just tickles your insides and brings a smile to your face and than hang on to those feelings with both hands.
You all make me smile everytime I read this thing! Keep it up, for all our sakes.
Our ride today will be dedicated to Brenda and Dee...can you feel the cool breeze on your face? Yes, it is cool here in Southern California, June gloom!
Lots of good thoughts and positive energy coming your way!
Hey Nurse Dee and Chemo Sabe,
ReplyDeleteSounds like you're having sooooo much fun with Michele in Houston. Wish we could be there with you for a mini VP reunion. Would LOVE to Skype with you guys some night. Let us know by email when might be a good time.
I'm so jealous of the fantastic head rubbing!! That sounds like a fun time, and I must say there's nothing cuter than a sweet butch with a smoooooooth head. You go sista!
So sorry they keep bringing you pink stuff to wear Chemo Sabe. I must say when I saw those photos of you having lipstick forcibly applied, it brought back terrifying memories from my own childhood. I really know that khakis, jeans, navy clothing and hiking boots are really the only clothing that is TRULY comfortable for US! I can't tell you how many femmes have tried to "drag" me to the women's department insisting that I'd surely find something I WANTED to wear. It hasn't happened yet!
I know this next phase with Chemo and Radiation is probably scary and overwhelming. Like Vic I've seen many patients who feel so isolated and they have such a struggle. You are NOT alone my friend. You are surrounded with light, with people who love you and think about you every day. You are amazingly strong. You are gifted. I have no doubt you'll be BETTER than "better than new!" Know we are with you every step of the way.
The other thing in my experience that changes everything about how someone experiences treatment, is the attitude they have going into it. Truly, little affects the recovery than your state of being. You are remarkably strong and positive. These are the traits that make things much more smooth sailing. I can't tell you how often we see the folks who are very downtrodden and focused on problems....who end up having more problems than anyone else ever would. It's all in the attitude. And Sista...you got the best attitude of the bunch. I have no doubt you'll be one of the folks who walks through this smoothly.
Just think of how well things have gone so far!!! You have heard what Chemo can be like, how have you handled things this far? Like a Champ! So, I have NO DOUBT it will be that same way in this next phase. Have every faith. You walk in with a smile, you greet this thing head on, you have acceptance and peace with it. You be present with the process, you will be just fine. The only way to the end of this is through it.
You both are truly inspiring. Nurse Dee, you're probably one of the best nurses I know.
Much love, peace and warmth.
Love,
Amanda
Oh sister....
ReplyDeleteGot my special prize today in that little "puffy pkg"....I cried..you are such a special sister to me that words can NEVER describe! I love you !!!! Mine were as if I made them myself!! You know me soooo well!!!! Hugs to you :)
Love,
Rhonda
Thanks to everyone in this village that makes me smile and laugh until Dee tells me that we are going to get kicked out of our apartment for making too much noise with laughter. The neighbors can only imagine that we are doing drugs in some kind of cult because I have a bald head, sometimes a black dot on my head to line up the radiation, and laughter beaming through the walls. Being a cop I can only i can only imagine what I would think getting a call to this apartment.
ReplyDeleteMichele being here is like an I.V in the arm. We skyped the Aussies last night and I never had so much fun. Good god the bantering was hysterical and it was what the doctors ordered!!!
I get a blast of laughter and love daily and in many forms. This blog has been the research variable that all of my doctors will have to add to their studies of one bizarre, odd, perplexing and unique tumors this chemo sabe has managed to acquire in the most bizarre way. i really fooled them when this sinus tumor metastasized bilaterally to my neck without the major symptoms that would send me running to the doctor immediately. They have never seen neuroendocrine cancer metastasize to the neck and one doc even thought that perhaps i had two different cancers until he saw the size of my tumors.
Well, the staff and docs did a sufficient job at scaring the hell out of us on Tuesday. We had to sign the informed consent so of course they have to tell you the doom and gloom of what radiotherapy can and will do to my quality of life. We had 4 hours of being scared.
Dee didn't post all of the issues we are facing because every patient is different and they really don't know. Of course the areas being radiated are in the head an neck. They will radiate the brain lesion, sinus cavity, and my entire neck to include my thyroid. The report reads that they are doing chemo radiotherapy with "curative intent." Dee and i like those words. So in essence there is some give and take with the quality of life vs. no life at all. We were told from the beginning that this was a potentially life threatening cancer and our goal was to spare life with the least amount of side effects or as Michele would say the least amount of unwanted side effects. Not having a period is one side effect that is actually good. ;-)
We have a volume of things to read and cutting edge drugs to help with the mouth and throat sores. My god we have to go to a nutrition class and a bowel management class next week. They are committed to keeping me as comfortable as possible and the rest of it Dee and I will figure out how to manage with the help of our personal physician friends. I am not looking forward to this treatment and I have to look at it one day at a time or it is overwhelming. The side effects are delayed a week and they will intensify over time. They can last years so I have new regimes for the rest of my life to keep my quality of life the best it can be.
In light of the alternative, death, I think that these side effects remind me that I am alive and closer to the cure. I have kept my eye on the ball and focused on the cure with meditations, VP support, pharmaceutical intervention and the best psychologist ever.
it's odd because i have spent 23 years in law enforcement and the mantra from day 1 is no matter what I am going home after every shift. I have worked most of my career as a peer counselor and later as a licensed counselor to help minimize the post traumatic impact of a life threatening or traumatic incident. That has helped me to approach this situation but I can honestly say that fighting a potentially life threatening cancer has been tougher than 23 cumulative years of law enforcement. I am now being tested in ways I never thought that I would.
ReplyDeleteSo VPs I am extremely appreciative of all of the love and support you have given me in these past 2 months. It has really helped with my attitude and approach to this cancer. I have been in a profession for so many years that didn't really like the police until they called 911 and it was all problems and bad news. I have seen man's inhumanity to man and experiencing the love and generosity from the VPs has overwhelmed me in many ways. I get to see the good side of humanity and the love that really exists in places other than a predictable romance story. My heart has been touched and the love I am feeling is amazing. What you all are doing for me has given me so much faith in humanity. I feel so blessed to have so much love in my life. It truly is the variable that can't be measured.
The love and support that you are giving Dee means so much to me and I will never forget what you all have done for both of us. It is hard on her to watch her partner of 23 years to go through this cancer treatment. Being in Houston is another variable that is tough on both of us so the blog keeps us from being so homesick. It feels like we are all in one neighborhood and we are scattered all over the U.S.
Thanks to everyone for the love and prayers. You all know people that I don't even know that are asking about how I am doing or are saying prayers for me. I will take all that I can get at this point.
I have a few more days of being up so I wanted to make sure that i posted a huge thank you for all that you have done for Dee and I.
love,
Chemo Sabe
My dearest Chemo sabe
ReplyDeleteAs for me no thanks are ever necessary... it is done because we love you and believe you are a very special person. Hopefully you (and Dee) will always feel free to call, skype or contact me if you ever feel the need to talk, vent or whatever... you know I have been down this road before both as a social worker/psychotherapist and in my personal life with my last partner, numerous friends and both of my parents. Counseling and helping others through loss (and that includes loss of your former good active self for the time being) has always been part of my life... so feel free!
Your strength and determination will carry you through regardless of the outcome and you always have all of the VP's to fill in and help you (and of course Dee) through those dark nights of the soul. Always sending and feeling those good positive energies... healing angels (in and out of embodiment)... with the mantra "better than new"!
Love & Hugs, Cathie
Chemo Sabe and Nurse Dee...Your thanks are humbly accepted by all of us! You're so right about 'love' being the variable that can't be measured. Jackie and I are simply Olivia connections in your life, but we feel the strong love that your circle of friends demonstrate on a daily basis. It's obvious that your caretaking soul has been there for others and that your competitive nature will continue to surface as you cover the bases that will bring you home 'better than new'. You are doing everything right...embracing your fears, staying in the moment, preparing for this battle, living with the difficult times and feeling grateful for the doctors who are overseeing this journey, as well as your family of friends. All of our arms of support surround you as this next phase begins.
ReplyDeleteLove,
Bonnie and Jackie
Wow, that was a wonderful trip. Koko - it was so good that you could come to meet us for dinner. Us gals were smiling all day thinking about your visit. In life, few things ever live up to the hype, your visit did just that for us. Laughter and warms hearts, just what any doctor would order.
ReplyDeleteDee and Chemo sabe thank you for making my visit so easy. Chemo sabe, Karen still cannot believe you went for the Dunkin Donuts coffee - not me!!! I am amazed as well, but when I try to explain how good you look and your energy level, it is difficult to articulate precisely. You look great and your attitude is remarkable. Yet for some reason she just cannot understand how waiting on me was medicinal. I did suggest she try it, and as you can imagine, that did not go over well. She just keeps repeating - "I have been doing that for 21 years"!! So perhaps this is the time that I say - thank you Karen for making my life so easy. Because of your efforts I was able to spend some time with our friends. Trust that you were there in my heart (1-4-3)
As I explained during our visit, there is no way this disease will win. With your spirit, determination, razor sharp focus and desire to live, the cancer and the treatments toward the cure will not take you down. The road will undoubtedly be tough. But hey, every road in Houston was tough - and the drivers - another story completely. But you and Dee are clearly in the drivers seat. I can hear Dee now at the first hurdle - "See Bren - see that - see what I mean"? Tee hee
Becky - it was nice to meet you and your son - virtually. He is precious. I smile a broad smile every time I hear him say Aunt Brenda what happened to your hair?. What you missed after the skype ended was the words of praise Dee and Chemo sabe had for you and your family. I cannot wait until this is all over and we can all meet face to face for a "tumors ARE gone" celebration. They clearly value your friendship.
Kim and Wendy, the skyping last night was fantastic. We were still laughing this morning. I have no idea what their neighbors are thinking. As Chemo sabe explained, they see her - bald and beautiful. Dee is clearly at her side. Their apartment varies form complete silence to roaring (and anyone that knows Chemo sabe's laugh knows I am not exagerating when I say roaring) laughter. Then sporadically, different women come and different women go. Some spend the night, some spend the week and again silence and laughter. One can only imagine what goes through their minds, but I kind of like messing with them.
So we are set on screwing with science by keeping the laughter as part of the curative treatment. Now we have a bonus objective - screwing with the neighbors. Let's keep the laughter going and the speculation thriving.
Dee and Chemo sabe, Karen and I are going to look at calendars over the weekend for a joint trip. Until then we will skype and blog and call and use any cummunication means available to let you know you are both in our thoughts and prayers - all the time.
We love our beads and the heartfelt message that came along with them.
Love you both.
Hey Dayna and Louise,
ReplyDeleteI hope your ride was fantastic. As we are reading your entry, karen is saying - that is just like me- I cannot remember the password, ever. Only difference, I wrote Karen's down on a piece of paper with step by step instructions on navigating the blog and her account. Her mantra is - I'll wait for Michele to come home.
So for those of you (you's if you live in NJ)that think I don't do much except work and blog, I do drag Karen kickin and screaming into the age of technology.
Now it is time to get some work done. good night all.