So my loving husband decided to with hold some information from me over Christmas so I could enjoy the time. Well, today I was slapped with a bit of reality that I wasn't quite ready for. So here is the rest of the mess.
There are two enhancing lesions in the cerebellum, one located midline measuring 1.7 x 1.5 cm and another left side cerebellum measuring 2.22 x 2.2cm. Surrounding vasogenic edema is present and mass effect on the fourth ventricle is present. Meaning in my terms, there might be cancerous spots on the brain barrier as well, not just the one original spot we knew about. I could care less that there is two, it really doesn't make a difference to me right now. The edema could be because of the pressure from the two lesions and might just be fluid build up. If this is the case then once the swelling goes down from the radiation the fluid should drain. If not, I will need a shunt. Oh well, already got a plastic line in my chest anyways, what's another one?!
If is not just due to the swelling and it is actually cancerous cells, then whole brain radiation would be suggested, but the crappy side to this is, we really only get to do it once, and if it doesn't work, then there is nothing else they can do for me radiation wise.
We are talking about possible starting up chemotherapy again after my brain has some time to heal and I have some time to get better, but we'll have to get all our ducks in a line.
The lymph node info was correct. Has grown from 2.4 - 2.6 cms. Looking on the bright side it has slowed down. A new, small, right lymph node has shown up measuring 1.2cms. We were told that most lymph nodes are about 1cm so we are only .2 over that, but still it would have been nice to not have it show up at all. Right middle lobe medial segment nodule measures 2.0 cm diameter, stable. No change.
A tiny right lower lobe lateral bs (that's just what we are going to call it because neither you or I really care about real name of it is) micronodule measures 4mm in size. That's new. There are also other faint smaller ground-glass density micronodules in the right lower lobe lateral basal segment are also now visible. I know, a lot of that is Greek, but whatever. That is the report and just thought I would share.
Ken, because he had to and I totally understand why, asked how much time we would have if I chose to do nothing. Best "guess", only a guess was 3-5 months. BUT! we are NOT going to be doing nothing so that will not be happening. But I understand he needs to ask the hard questions. It is like a tragic accident, you want to look away, but you just can't stop yourself.
To find that friggin' sliver lining again - I will sum this up. "There is no other lesion in brain parenchyma. Gray-white matter differentiation is preserved. No other abnormal enhancement is present. No bone lesion in the skull is identified." In regards to the chest, "No aggressive bone lesions is present." Also good. Abdomen and pelvis - "There is no suspicious hepatic lesion. The adrenal glands are normal. The kidney, spleen, pancreas and bowel are all within normal limits. There is no ascites of adenopathy. IUD is present in the anteverted uterus. No bone pathology is present." Some of that is just for a good old freakin' laugh. At least the IUD has stood the test of time, in my anteverted uterus. All of my blood work is still holding up fine and liver function is good.
I am just frustrated with all the hard decisions that we have to make again. I knew we would but I was just more hopeful than I should have been. I told Ken I feel so stupid for feeling so excited when I didn't actually have all the facts and now I just look dumb. But I know where he was coming from. He wanted me to have fun, he wanted me to laugh, he wanted me to enjoy and not worry. He wanted me to have what I deserve. And I love him for that, more than he will ever know.
Thursday, December 27, 2012
Saturday, December 22, 2012
Small miracles.
You may or may not know this about me. Before going through what I have been going through, I was pretty much a Negative Nelly, glass half full or even a little less than half full, kind of depressed, well, I was on antidepressants so I guess I was depressed, and rather ungrateful sometimes for the stumbling blocks that I had to overcome. I often felt miserable and sad and angry. You would never really know it to look at me from the outside, we all know how to build great walls around us to keep us safe.
Yesterday some of my wonderful friends came rushing to our aid and cleaned my ABSOLUTELY disgusting house. I am not kidding, it was gross. You could have planted grass seeds in the dust, toilets were back to something akin to a horror movie, smears and smudges all over the mirrors, you could have had a meal from all the crumbs and food on the floor... well, a small one anyways, enough to take the hunger pang away.
Ken and I needed to go down to the states to "pick up Christmas" as I liked to call it. It was waiting at the boarder. Almost all of the women here that didn't have plans after cleaning our mess (work, getting ready for the holidays themselves, spending time with family - it's a really busy time of year and I can't even explain how much gratitude I felt for them coming to us in the first place), offered to take our kids so we could run down by ourselves and grab the stuff we needed to get. I kinda had mixed feelings as I had already bawled my face off in the bed that morning as I snuggled our littlest guy, gazing and memorizing the already well know details of his face, looking at his "crazy baby hair" as we used to call it, I guess now it is crazy little guy hair. He was wrapped up in me and me in him. But, my heart still shattered at the thousands of thoughts that fill my mind at times about "MY" babies. How I am supposed to be here to be their Mommy. How although, they drive me bat crap crazy sometimes, I don't want to miss one single moment of it. I was up, and ready, and showered with my game face on for them and Ken too, and I knew if it was just Ken and I driving down that our thoughts and feeling would be free to flow and wander. Which easily equates to: more crying. But I knew the kids would LOVE to play with their friends so we did leave them here. They also had a really good time helping the girls clean the house.
The car ride was quite, and tear filled and needed, I guess. Like we haven't had these freakin' stupid conversations 10,000 times before, it just needed to be done again. I know my kids would be ok. Their father is a pretty amazing man. Honestly what I struggle with the most is knowing that my husband, a man who has loved me through thick and thin and thinner, will eventually fall head over heels in love with someone else. AND, that is how it is supposed to be. Sadly, we all have to move on and I truly believe that no one is meant to be alone. But it is heart and gut wrenching to me to think of this. To not have this entire post be depressing, because honestly the good part is coming, I guess that I have to look at it as gaining a sister wife. And Ken said to me, "Honey. I want to believe that you will help me to find her. The perfect women to mother "our" children. One that if I died, I wouldn't have any hesitations leaving our kids too. And that would be a really hard thing for me to do. I am not trying to be a jerk, but it would be really hard. So I need to think that you would help pick her out for me." Insert EVIL, cRaZy, laugh!!!!!! Oh, kidding. Of course I want her to be right for the job at hand. It would not be an easy one and I know I would love her for all the sacrifices she is making to love our broken little family. That it was meant to be like this.
On the way home I was a little angry and I told Ken that I was mad at myself for pissing (pardon the French) my life away. "WHAT are you talking about?" he said, rather confused. I was angry for being so selfish and stupid before about being "overwhelmed", "annoyed", "miserable", "cranky", "tired", "having a PROBLEM with the kids or Ken." I was just mad. Hind sight is always 20/20 and if I knew then what I know now, my life and choices about the way I react to most situations would have been completely different. But I guess that it why we are here. To learn and grow!
I spent two and a half hours on the phone the night before with one of my closest friends, LH. Man I have learned so much from her. She is such a blessing in my life! I can't even begin to explain it! She is already living my worst nightmare, and although she has her down right crappy moments, she still finds those times to smile, so I feel safe talking to her, and reassured when I talk to her. Anyways, she is reading a book about Grieving. She was telling me about a lady in the book who explained that "I now know, what a PROBLEM is." Ummmm, this is quote by Geneva and Arnold so don't take if word for word ok! "The rest of the things in life that [she] had experienced, were inconveniences." How true. It just made me realize a lot. This situation that we are in is an actual problem... one I still believe can be solved, so I am not surrendering! But it still made me reflect on my bad behavior's over the past years and regret the way that I have acted. Remember though, I am still learning and I am not done yet!!
We then started talking about getting the rest of the results form the CT. I told Ken I wasn't really up for anymore bad news when he made a rather funny point that brought a huge smile to my face and even a laugh to cross my lips. He said, "Babe. You have already been told you are dying. That is like someone saying to us, 'Ken and Geneva, before you get home you are going to get in a car accident and die. After you die, the car is going to blow up.' Hon! Who cares, we'll already be dead!" (Raised eyebrows and a shrug, he's right!)
Well, we did call our GP to get the rest of the details from the CT. Are you ready for the miracle? (Now you can insert tears if you like, I know I sure did) The miracle that I have been praying for all along, the miracle that showed me that ALL OF OUR PRAYERS have been heard all along... and that I have not been forgotten? Well, here it is. I wanted to type it up for you last night but I was feeling so sick and exhausted from everything and only getting two hours of sleep the night before that I just didn't have it in me, but my heart was bursting to thank you all and share it with you! I know I know, shut up and get on with it!
The rather rapidly growing lymph node in my carina has only grown from 2.3cms, to 2.6cms in the past 4.5 months. AND, the lung nodule is actually STABLE!!! Did you hear that! No growth in the past few months. Still 19 mm's!! AND no new lesions were seen anywhere else in my chest or abdomen either!! Ya, I realize that this still isn't best case, but I have said over and over and OVER again that I would take stability! In a heart beat I would. At least I know that everything that I have been doing is not for not. The hard work that I have been putting in is being paid off in some major ways! It gave me so much fight and drive! I can't even explain it to you. And my tumor markers actually stayed the same, at 61, just like they were last month. They have been going up and up slowly ever since April.
I am not an idiot, even though said Arnold make me feel like one sometimes (but at least I can joke about the bugger now that I know what is going on); I can get up and do whatever it takes, to give me however long I can have in "my" life. I know it is not going to be easy. In our Church there is a picture of the Savior. He is in a white robe in the Garden of Gethsemane. And the caption underneath it says, "I never said it would be easy, I only said it would be worth it." How true these words ring.
And I am thankful, beyond words, measure, understanding even, for the love that I feel from my Heavenly Father and our Savior. I wasn't easy for them to accomplish what they did for you and for me. And I can honestly say, now that I am a parent and know of the love that you have for your children, that His heart breaks when mine breaks, and all He wants to do is pick me up and make it better for me. But we are here to learn and grow and teach and love. Just like our parents let us do when we were kids, and just like I will have to let my children do one day. But I will always be there for them, cheering them on from the sidelines and dusting them off as often as they will allow. And I know that the same is being done for me.
Have a Merry Christmas! I know I will and I will rejoice for the ultimate gift that has been given.
Yesterday some of my wonderful friends came rushing to our aid and cleaned my ABSOLUTELY disgusting house. I am not kidding, it was gross. You could have planted grass seeds in the dust, toilets were back to something akin to a horror movie, smears and smudges all over the mirrors, you could have had a meal from all the crumbs and food on the floor... well, a small one anyways, enough to take the hunger pang away.
Ken and I needed to go down to the states to "pick up Christmas" as I liked to call it. It was waiting at the boarder. Almost all of the women here that didn't have plans after cleaning our mess (work, getting ready for the holidays themselves, spending time with family - it's a really busy time of year and I can't even explain how much gratitude I felt for them coming to us in the first place), offered to take our kids so we could run down by ourselves and grab the stuff we needed to get. I kinda had mixed feelings as I had already bawled my face off in the bed that morning as I snuggled our littlest guy, gazing and memorizing the already well know details of his face, looking at his "crazy baby hair" as we used to call it, I guess now it is crazy little guy hair. He was wrapped up in me and me in him. But, my heart still shattered at the thousands of thoughts that fill my mind at times about "MY" babies. How I am supposed to be here to be their Mommy. How although, they drive me bat crap crazy sometimes, I don't want to miss one single moment of it. I was up, and ready, and showered with my game face on for them and Ken too, and I knew if it was just Ken and I driving down that our thoughts and feeling would be free to flow and wander. Which easily equates to: more crying. But I knew the kids would LOVE to play with their friends so we did leave them here. They also had a really good time helping the girls clean the house.
The car ride was quite, and tear filled and needed, I guess. Like we haven't had these freakin' stupid conversations 10,000 times before, it just needed to be done again. I know my kids would be ok. Their father is a pretty amazing man. Honestly what I struggle with the most is knowing that my husband, a man who has loved me through thick and thin and thinner, will eventually fall head over heels in love with someone else. AND, that is how it is supposed to be. Sadly, we all have to move on and I truly believe that no one is meant to be alone. But it is heart and gut wrenching to me to think of this. To not have this entire post be depressing, because honestly the good part is coming, I guess that I have to look at it as gaining a sister wife. And Ken said to me, "Honey. I want to believe that you will help me to find her. The perfect women to mother "our" children. One that if I died, I wouldn't have any hesitations leaving our kids too. And that would be a really hard thing for me to do. I am not trying to be a jerk, but it would be really hard. So I need to think that you would help pick her out for me." Insert EVIL, cRaZy, laugh!!!!!! Oh, kidding. Of course I want her to be right for the job at hand. It would not be an easy one and I know I would love her for all the sacrifices she is making to love our broken little family. That it was meant to be like this.
On the way home I was a little angry and I told Ken that I was mad at myself for pissing (pardon the French) my life away. "WHAT are you talking about?" he said, rather confused. I was angry for being so selfish and stupid before about being "overwhelmed", "annoyed", "miserable", "cranky", "tired", "having a PROBLEM with the kids or Ken." I was just mad. Hind sight is always 20/20 and if I knew then what I know now, my life and choices about the way I react to most situations would have been completely different. But I guess that it why we are here. To learn and grow!
I spent two and a half hours on the phone the night before with one of my closest friends, LH. Man I have learned so much from her. She is such a blessing in my life! I can't even begin to explain it! She is already living my worst nightmare, and although she has her down right crappy moments, she still finds those times to smile, so I feel safe talking to her, and reassured when I talk to her. Anyways, she is reading a book about Grieving. She was telling me about a lady in the book who explained that "I now know, what a PROBLEM is." Ummmm, this is quote by Geneva and Arnold so don't take if word for word ok! "The rest of the things in life that [she] had experienced, were inconveniences." How true. It just made me realize a lot. This situation that we are in is an actual problem... one I still believe can be solved, so I am not surrendering! But it still made me reflect on my bad behavior's over the past years and regret the way that I have acted. Remember though, I am still learning and I am not done yet!!
We then started talking about getting the rest of the results form the CT. I told Ken I wasn't really up for anymore bad news when he made a rather funny point that brought a huge smile to my face and even a laugh to cross my lips. He said, "Babe. You have already been told you are dying. That is like someone saying to us, 'Ken and Geneva, before you get home you are going to get in a car accident and die. After you die, the car is going to blow up.' Hon! Who cares, we'll already be dead!" (Raised eyebrows and a shrug, he's right!)
Well, we did call our GP to get the rest of the details from the CT. Are you ready for the miracle? (Now you can insert tears if you like, I know I sure did) The miracle that I have been praying for all along, the miracle that showed me that ALL OF OUR PRAYERS have been heard all along... and that I have not been forgotten? Well, here it is. I wanted to type it up for you last night but I was feeling so sick and exhausted from everything and only getting two hours of sleep the night before that I just didn't have it in me, but my heart was bursting to thank you all and share it with you! I know I know, shut up and get on with it!
The rather rapidly growing lymph node in my carina has only grown from 2.3cms, to 2.6cms in the past 4.5 months. AND, the lung nodule is actually STABLE!!! Did you hear that! No growth in the past few months. Still 19 mm's!! AND no new lesions were seen anywhere else in my chest or abdomen either!! Ya, I realize that this still isn't best case, but I have said over and over and OVER again that I would take stability! In a heart beat I would. At least I know that everything that I have been doing is not for not. The hard work that I have been putting in is being paid off in some major ways! It gave me so much fight and drive! I can't even explain it to you. And my tumor markers actually stayed the same, at 61, just like they were last month. They have been going up and up slowly ever since April.
I am not an idiot, even though said Arnold make me feel like one sometimes (but at least I can joke about the bugger now that I know what is going on); I can get up and do whatever it takes, to give me however long I can have in "my" life. I know it is not going to be easy. In our Church there is a picture of the Savior. He is in a white robe in the Garden of Gethsemane. And the caption underneath it says, "I never said it would be easy, I only said it would be worth it." How true these words ring.
"The Atonement of Christ began in the Garden of Gethsemane. Here Christ began
to take upon Himself the sins and infirmities of the world. Even He was
astonished at the suffering which overtook Him when this process began. He had
to bear this burden alone. He suffered the consequences of our sins, but He
also suffered every sickness and pain possible in this life. He felt all the
consequences of mortality, even those which do not result from sin. He did this
in order to be able to succor us and comfort us. There is no trial we can be
called upon to bear which He does not understand."
Have a Merry Christmas! I know I will and I will rejoice for the ultimate gift that has been given.
Friday, December 21, 2012
The Plot Thickens...
I hate to do this late at night, I wanted to be inspirational and uplifting, but I am exhausted and the house is quiet - and so I write.
I have had a really bad headache for the past few weeks. I experienced a similar headache in September but just thought that I was over-reacting to life. I didn't want to say anything to Ken or anyone else because I didn't want them to worry or freak out... we have done absolutely enough of that this year.
I have also felt that I have been loosing my balance here and there, and it was progressively getting worse. I felt like I wasn't really inside my head and I felt a little foggy. My periods stopped... again and I was getting hot flashes. Ya, menopause twice! I am banking on, "third times a charm".
Finally on Sunday I caved and told Ken how I was feeling. Monday morning we got in to see our GP. And we set things up for a full head, chest and abdomen CT in January... we didn't want to know anything before Christmas anyways.
Monday my headache took a turn for the worse. It was so much more than anything that I had ever experienced before. Then I started grilling anyone I knew about migraines. It had to be migraines and STRESS!!!! But the dizziness didn't really fit anywhere into the equation. Whenever I bent over, pardon me, but, yelled (I am sure you do it too once in a while!!) or did a few other things it literally felt like the base of my skull was going to snap in half or else my head was going to explode out of my forehead. It was awful. But to sit up straight and do my daily tasks, no pain at all.
This morning when I woke up, hopeful that it was getting better, I realized it wasn't so Ken and I decided to head to the hospital. We brought C with us - he never wants to be away from me and that is fine. That was the gift I got from being away from him for 6 weeks last year, he became super attached. Don't get me wrong, but it is not an ideal situation for a pap or "C" talk.... well, quite a few things actually.
But we did have to have a "C" talk with our little guy there. The Dr said it was totally up to us if we wanted the exam done or not. He said the only good part of having it done and knowing if it wasn't so great was that he could give me drugs to help me feel better. "Light Bulb"! Have you seen Despicable Me? One of MY faves!! Ya, I was in. Ken said, "Well babe, as far as you are concerned it is already there anyways so lets just find out."
I asked Ken after to take C and drop him off somewhere. I didn't want him anywhere near us when we got the results. While Ken was out, there was a Code Red (what is that BTW??) to the Psych ward and literally the whole building was on lock down.
I was laying in the bed, looking up at the netting on the top of the sheet wall - whatever it's called - and thinking, (ready for my silver lining) "I am so blessed to not have to be alone." Yes, at that exact moment I was physically by myself, but I knew my husband was just on the other side of the wall, waiting for me. I thought of all "those" people who wait in beds like this, for results like mine, and don't have anyone there with them to hold their hand or tell them, "It's going to be ok. We'll get through this together." I was also very thank for an experience that I had the day before with my little man.
He wanted to play a computer game and I set it up for him. I never really understood what, but something in it scared him. We had to run out to do some last minute Christmas shopping so I had asked him to go and get into the car. He did but then he came back in, said he was scared, and then said, "Well actually Mommy, I justh needed you to do up my jacket." As I was zipping up his coat, I touched my finger to his little nose and said, "Buddy, it ok if you are afraid. I am your Mommy and I am here to keep you safe and let you know that it is going to be ok." He was fine with that answer and we hugged and got into the SUV together.
HOWEVER, promptly after I said this, the same feeling came over me. I felt my Heavenly Father say to me, "Geneva, I know you are afraid. But it's ok. I am your Father and I am here to keep you safe and let you know that it's going to be ok." I can't tell you all of the experiences that I have had over the past few years, but I can tell you that I know that He lives! I know that He loves me, and you! I know He knows me better than I know myself and I know He is here for me when I am afraid. And when I am living my life aligned with the way that God would want for me, I literally do not have fear! I know that might be hard to understand, but it's true!
Ok... back to the thickening part... I also thought of this situation as I was lying on this bed waiting for Ken to be able to come back in. I felt peace though, knowing that I was cared for.
One of the nurses came and took me in for my CT. Again, waiting alone, like I have so many, many other times before. This time however, I was making everyone around me laugh... I was being Debbie D. Whaaa, waaaaaa. Sorry guys, you just GOTTA laugh sometimes.
After the CT was over, I went back to my "room" let's say, and my husband was trying to have a nap on my bed. Well, I kicked Goldie-not-so-locks out and then we played Monopoly on the iPad. Best time waster ever.
Then Dr parted the sheet and I knew the exact moment I saw his face, what he was about to deliver. "Geneva. I am really sorry. It's not good news. You have a mass at the base of your cerebellum that it 1.5-2.0cm's in size. That is what is causing the pressure, pain and dizziness." And just like that, our world changed, yet again, in an instant.
He was very positive, reassuring us that he is NOT a specialist, but that there are a few things that we will most likely be able to do. Surgery - well, maybe not. He said it is kind of at a tricky spot so if they did do surgery then I have some permanent damage there and even blindness.
Chemo - yes, likely chemo would be an option.
Radiation - well, they would most likely do a trial run with it and see if the tumor would respond to it. There is absolutely no point in doing it if I am going to be puking my guts out for weeks to not have Arnold (ya, the name Ken gave it, you know, "It's not a tumor..." And yes, I did freakin' laugh!) shrink any.
But, our shiny, bright new year will be full of visits with specialists and such so we will have more information by then.
I told Ken that I still believe in Reno with all my heart. Dr. F and his team, are some of the most amazing people I have ever known. And, who doesn't love an oncologist who's been in the buiz for 40 years. I think the man knows what he is doing. I feel amazing doing this treatment, and I have the whole time. Part of the problem is the cost of doing alternative treatments (PLEASE KNOW I DIDN'T SAY THIS FROM A PITTY PARTY STAND POINT! You have all done so much for us, it is just that we really need to reasses our situation. Sadly, we don't have all the money in the world and we are young so we do have to be careful. We have already spent so much. If we weren't able to continue with this treatment, it would not be because I don't think it works.) So I said to Ken, "Before we make any decisions, I want every body's cards on the table. Dr. Oncologist from Kelowna, Cranbrook Dr in charge of the unit here, Dr. F and his team, and Dr. Radiatino Oncologist from Kelowna. I want to know what everyone thinks I should be doing and then.... we pray."
I would like to mention here quickly that I have no regrets. I don't want to hear anyone or have anyone give me the "I told you so" look cause I will smack it off your face so quickly you won't know where it came from. O.u.r decision to do treatments from the States did not come lightly. There was much fasting and prayer that went into that decision. I did express this concern to my Mommy who said, "Honey, if nothing else, Dr. F's treatments built your body back up healthy and strong, so whatever you choose to do next, you will be ready for." Love that woman!!!!
I also want to mention that when Ken and I were talking to our GP, said GP said... you got that?? "You guys might not like me that much at times, but I will be honest with you. If you are going to do hardcore treatments for 3 months and it might give you 3 months, then I would encourage you to keep doing what you are doing and feel good for the remaining time you have left. If you are going to do treatments for 3 months and it will give you a year, I would strongly recommend you do it. AND if at anytime you are doing treatments to get the "year" or whatever it is and it is not looking so good, I will tell you at that time." She also pointed out, this we already knew, that I could be healthy and strong while doing this, but I could get pneumonia and that could kill me over the chemo. It happens often. And we already know that my white count is fragile so we need to be careful in what we choose to do. So there will be much more thought and prayer that goes into this decision as well.
To help with the swelling which is causing part of the pain, I was given Dexamethasone... again. This fiery little ball of crap helped me to gain 18 pounds in like 6 weeks last year... Oh, did I forget to mention that I have finally lost 65 pounds, so of course the first comment I made was, "This is going to make me fat again." ER Dr laughed. I am on a low-ish dose for now, if it isn't really helping then I will up it. I guess at least this time I might only go from 129.2lbs (ya, it was a huge feat for me so it's important right now ok! Think I am vain, whatever.) to 149.2lbs. That is better than 173-193lbs like last time!
This part is VERY important. Again, we are not telling the kids until we have made some decisions. And we are most certainly not going to dwell on the dying part. Yes, we are going to talk about it a little now, and more when the time draws closer... and for those of you who may not have figured it out yet, I am not throwing in the towel. I still believe in miracles big or small. I have had many in my life I believe. But we can't tell the kids now when we don't really have all that much info to give them and that isn't fair. I think Ken didn't really want to say anything until I was close to passing gas, I mean, away, but I said, "If we do things a little more aggressively again my hair is probably going to fall out. I am going to be sick again. Those sorts of things you can't hide from your kids."
And, as hard and sad as it is going to be (well, we are all going to die eventually, right? So we are going to have to bring it up one day, hopefully in the distant future), I need to know that we have prepared them well. I need them to believe in the Plan of Salvation. That I am their Mommy for now, and for all eternity! And that I will still be here for them. In the big moments, and small. And that God will comfort them when their little hearts are breaking, whether Himself, or by those of you who love us and love them. And that hopefully I will be able to comfort them and they will feel it from me. K, that, was totally depressing, but today has been some of our lowest lows I think. But we are still hanging on!
Now that we have pooped a little on your Christmas, I hope you will forgive us. I hope you will remember why we celebrate Christmas. I hope you will melt in the joy of your child's eyes this season. That you will find comfort in the peace that has always been available to us all. I hope you will love your families a little bit more and worry a whole lot less.
I love you. We love you! We need you and your prayers and again, we thank you for every moment you think of us and pray for us and love us from where ever you are! We need you. I need you.
May our Father in Heaven bless you this season and in the year to come!
I have had a really bad headache for the past few weeks. I experienced a similar headache in September but just thought that I was over-reacting to life. I didn't want to say anything to Ken or anyone else because I didn't want them to worry or freak out... we have done absolutely enough of that this year.
I have also felt that I have been loosing my balance here and there, and it was progressively getting worse. I felt like I wasn't really inside my head and I felt a little foggy. My periods stopped... again and I was getting hot flashes. Ya, menopause twice! I am banking on, "third times a charm".
Finally on Sunday I caved and told Ken how I was feeling. Monday morning we got in to see our GP. And we set things up for a full head, chest and abdomen CT in January... we didn't want to know anything before Christmas anyways.
Monday my headache took a turn for the worse. It was so much more than anything that I had ever experienced before. Then I started grilling anyone I knew about migraines. It had to be migraines and STRESS!!!! But the dizziness didn't really fit anywhere into the equation. Whenever I bent over, pardon me, but, yelled (I am sure you do it too once in a while!!) or did a few other things it literally felt like the base of my skull was going to snap in half or else my head was going to explode out of my forehead. It was awful. But to sit up straight and do my daily tasks, no pain at all.
This morning when I woke up, hopeful that it was getting better, I realized it wasn't so Ken and I decided to head to the hospital. We brought C with us - he never wants to be away from me and that is fine. That was the gift I got from being away from him for 6 weeks last year, he became super attached. Don't get me wrong, but it is not an ideal situation for a pap or "C" talk.... well, quite a few things actually.
But we did have to have a "C" talk with our little guy there. The Dr said it was totally up to us if we wanted the exam done or not. He said the only good part of having it done and knowing if it wasn't so great was that he could give me drugs to help me feel better. "Light Bulb"! Have you seen Despicable Me? One of MY faves!! Ya, I was in. Ken said, "Well babe, as far as you are concerned it is already there anyways so lets just find out."
I asked Ken after to take C and drop him off somewhere. I didn't want him anywhere near us when we got the results. While Ken was out, there was a Code Red (what is that BTW??) to the Psych ward and literally the whole building was on lock down.
I was laying in the bed, looking up at the netting on the top of the sheet wall - whatever it's called - and thinking, (ready for my silver lining) "I am so blessed to not have to be alone." Yes, at that exact moment I was physically by myself, but I knew my husband was just on the other side of the wall, waiting for me. I thought of all "those" people who wait in beds like this, for results like mine, and don't have anyone there with them to hold their hand or tell them, "It's going to be ok. We'll get through this together." I was also very thank for an experience that I had the day before with my little man.
He wanted to play a computer game and I set it up for him. I never really understood what, but something in it scared him. We had to run out to do some last minute Christmas shopping so I had asked him to go and get into the car. He did but then he came back in, said he was scared, and then said, "Well actually Mommy, I justh needed you to do up my jacket." As I was zipping up his coat, I touched my finger to his little nose and said, "Buddy, it ok if you are afraid. I am your Mommy and I am here to keep you safe and let you know that it is going to be ok." He was fine with that answer and we hugged and got into the SUV together.
HOWEVER, promptly after I said this, the same feeling came over me. I felt my Heavenly Father say to me, "Geneva, I know you are afraid. But it's ok. I am your Father and I am here to keep you safe and let you know that it's going to be ok." I can't tell you all of the experiences that I have had over the past few years, but I can tell you that I know that He lives! I know that He loves me, and you! I know He knows me better than I know myself and I know He is here for me when I am afraid. And when I am living my life aligned with the way that God would want for me, I literally do not have fear! I know that might be hard to understand, but it's true!
Ok... back to the thickening part... I also thought of this situation as I was lying on this bed waiting for Ken to be able to come back in. I felt peace though, knowing that I was cared for.
One of the nurses came and took me in for my CT. Again, waiting alone, like I have so many, many other times before. This time however, I was making everyone around me laugh... I was being Debbie D. Whaaa, waaaaaa. Sorry guys, you just GOTTA laugh sometimes.
After the CT was over, I went back to my "room" let's say, and my husband was trying to have a nap on my bed. Well, I kicked Goldie-not-so-locks out and then we played Monopoly on the iPad. Best time waster ever.
Then Dr parted the sheet and I knew the exact moment I saw his face, what he was about to deliver. "Geneva. I am really sorry. It's not good news. You have a mass at the base of your cerebellum that it 1.5-2.0cm's in size. That is what is causing the pressure, pain and dizziness." And just like that, our world changed, yet again, in an instant.
He was very positive, reassuring us that he is NOT a specialist, but that there are a few things that we will most likely be able to do. Surgery - well, maybe not. He said it is kind of at a tricky spot so if they did do surgery then I have some permanent damage there and even blindness.
Chemo - yes, likely chemo would be an option.
Radiation - well, they would most likely do a trial run with it and see if the tumor would respond to it. There is absolutely no point in doing it if I am going to be puking my guts out for weeks to not have Arnold (ya, the name Ken gave it, you know, "It's not a tumor..." And yes, I did freakin' laugh!) shrink any.
But, our shiny, bright new year will be full of visits with specialists and such so we will have more information by then.
I told Ken that I still believe in Reno with all my heart. Dr. F and his team, are some of the most amazing people I have ever known. And, who doesn't love an oncologist who's been in the buiz for 40 years. I think the man knows what he is doing. I feel amazing doing this treatment, and I have the whole time. Part of the problem is the cost of doing alternative treatments (PLEASE KNOW I DIDN'T SAY THIS FROM A PITTY PARTY STAND POINT! You have all done so much for us, it is just that we really need to reasses our situation. Sadly, we don't have all the money in the world and we are young so we do have to be careful. We have already spent so much. If we weren't able to continue with this treatment, it would not be because I don't think it works.) So I said to Ken, "Before we make any decisions, I want every body's cards on the table. Dr. Oncologist from Kelowna, Cranbrook Dr in charge of the unit here, Dr. F and his team, and Dr. Radiatino Oncologist from Kelowna. I want to know what everyone thinks I should be doing and then.... we pray."
I would like to mention here quickly that I have no regrets. I don't want to hear anyone or have anyone give me the "I told you so" look cause I will smack it off your face so quickly you won't know where it came from. O.u.r decision to do treatments from the States did not come lightly. There was much fasting and prayer that went into that decision. I did express this concern to my Mommy who said, "Honey, if nothing else, Dr. F's treatments built your body back up healthy and strong, so whatever you choose to do next, you will be ready for." Love that woman!!!!
I also want to mention that when Ken and I were talking to our GP, said GP said... you got that?? "You guys might not like me that much at times, but I will be honest with you. If you are going to do hardcore treatments for 3 months and it might give you 3 months, then I would encourage you to keep doing what you are doing and feel good for the remaining time you have left. If you are going to do treatments for 3 months and it will give you a year, I would strongly recommend you do it. AND if at anytime you are doing treatments to get the "year" or whatever it is and it is not looking so good, I will tell you at that time." She also pointed out, this we already knew, that I could be healthy and strong while doing this, but I could get pneumonia and that could kill me over the chemo. It happens often. And we already know that my white count is fragile so we need to be careful in what we choose to do. So there will be much more thought and prayer that goes into this decision as well.
To help with the swelling which is causing part of the pain, I was given Dexamethasone... again. This fiery little ball of crap helped me to gain 18 pounds in like 6 weeks last year... Oh, did I forget to mention that I have finally lost 65 pounds, so of course the first comment I made was, "This is going to make me fat again." ER Dr laughed. I am on a low-ish dose for now, if it isn't really helping then I will up it. I guess at least this time I might only go from 129.2lbs (ya, it was a huge feat for me so it's important right now ok! Think I am vain, whatever.) to 149.2lbs. That is better than 173-193lbs like last time!
This part is VERY important. Again, we are not telling the kids until we have made some decisions. And we are most certainly not going to dwell on the dying part. Yes, we are going to talk about it a little now, and more when the time draws closer... and for those of you who may not have figured it out yet, I am not throwing in the towel. I still believe in miracles big or small. I have had many in my life I believe. But we can't tell the kids now when we don't really have all that much info to give them and that isn't fair. I think Ken didn't really want to say anything until I was close to passing gas, I mean, away, but I said, "If we do things a little more aggressively again my hair is probably going to fall out. I am going to be sick again. Those sorts of things you can't hide from your kids."
And, as hard and sad as it is going to be (well, we are all going to die eventually, right? So we are going to have to bring it up one day, hopefully in the distant future), I need to know that we have prepared them well. I need them to believe in the Plan of Salvation. That I am their Mommy for now, and for all eternity! And that I will still be here for them. In the big moments, and small. And that God will comfort them when their little hearts are breaking, whether Himself, or by those of you who love us and love them. And that hopefully I will be able to comfort them and they will feel it from me. K, that, was totally depressing, but today has been some of our lowest lows I think. But we are still hanging on!
Now that we have pooped a little on your Christmas, I hope you will forgive us. I hope you will remember why we celebrate Christmas. I hope you will melt in the joy of your child's eyes this season. That you will find comfort in the peace that has always been available to us all. I hope you will love your families a little bit more and worry a whole lot less.
I love you. We love you! We need you and your prayers and again, we thank you for every moment you think of us and pray for us and love us from where ever you are! We need you. I need you.
May our Father in Heaven bless you this season and in the year to come!
Thursday, December 6, 2012
My Christmas Wish.
Without getting into all the depressing details of what I would really love for Christmas, I will ask for one small gift from you.
This is the gift of being fearless. Be fearless while living your authentic life. Love who you are and as many moments as you can while going through this life.
Be fearless with me. I need now, more than ever, for people to believe in me as much as I believe in me. I need you to tell me positive things, I need you to keep me going, I/we need your prayers and your faith in us. I was talking to a dear friend. This is how our conversation went.
D - " I know this has been so hard on you, but sweetie, I feel so positive that you're going to be around for decades to come. "
This is the gift of being fearless. Be fearless while living your authentic life. Love who you are and as many moments as you can while going through this life.
Be fearless with me. I need now, more than ever, for people to believe in me as much as I believe in me. I need you to tell me positive things, I need you to keep me going, I/we need your prayers and your faith in us. I was talking to a dear friend. This is how our conversation went.
D - " I know this has been so hard on you, but sweetie, I feel so positive that you're going to be around for decades to come. "
Me - "Me too D. From the depths of my soul I believe that! Have felt that way from the beginning, but sometimes I forget to hold onto that little voice, telling me it's going to be ok and I am going to be here."
D - "Then let me and all the others who love you be that little voice when you forget. :)"
Me - "Instant bawling. Thanks D. Thank you thank you thank you.
Not for the crying part, but being my little wellness warrior with me!"
I NEED you all to be my wellness warrior's with me. I need your encouragement, I need your "get up and go" attitudes, I need your prayers. I can honestly say that I don't know what I would have done if I had to face this situation alone. It is hard enough at times to face it with all of you backing us! But I draw so much strength from all of your love and continuous support.
This is my Christmas wish. That you will continue to push us along in this exhausting journey that we are currently on. I know that my Father in Heaven loves me and my family, and you and yours. I know that the greatest gift of Christmas was our Savior. I know that He loved us so much that He endured and conquered death. I know that he blesses our lives each and every day, even if it just by the gift of another day. Those kinds of gifts are priceless.
And to wrap up with a "Thank You". A big huge one, from the bottom of my toes. I hope your Christmas is amazing and spirit filled. That you will enjoy the love and laughter that is truly a blessing bestowed upon us all... even if it is just in moments.
Inspiration.
Where does it come from? Can someone give it to us? Obviously, that is why I decided to write today instead of putting if off, over and over again.
The definition of inspiration is:
The definition of inspiration is:
in·spi·ra·tion
/ˌinspəˈrāSHən/
Noun
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