Day three came and went. So far dad has only been tired and unable to sleep. I could deal with that. I wonder if he feels that same way I feel- with a tighness in my chest, shortness of breath when I can't sleep. I must remember to ask him.
That tighness goes away when I am comfortable with my surroundings, dinner with a friend, drinks at the local pub and recieving a hug from a close friend, or just knowing that your best friend will come through for you in the end. The tightness in my chest gets worse before it gets better- and yet it goes away with these things. Wonder if dad has the same thing goin' on. mental note= to ask him.
Being organized is another story. It takes patience and organization to really have a grip on illness. IT SUCKS! and I'm not that good at it. especially when the Dr's call dad and he forgets to tell me things or schedules overlapping appointments with the Dr.'s - then I must try to reach the Dr's to get it straight- on a friday afternoon - AT 3PM... Omg! It's done. Fixed and well taken care of..
Hugs, they are a huge part of letting someone know that you care for them, understand them and just letting someone know that you love them. I cannot hug people because I cry. I cannot cry - a blubbering fool. I was hugged yesterday and well it was really nice, comfortable and unexpected. I wanted to cry and curl up into my friends arms for the rest of the day- (it was a much needed hug) but please - I cannot hug. Not sure where this stems from but it's the way that I am. One day I will be able to curl up into my friends arms and stay there after a good long hug - for now, I am unable to hug- Please come again.
Saturday, June 5, 2010
Wednesday, June 2, 2010
the test begins
2 days of chemo and dad looks great. I know that the chemo has to take it's toll but he's optimistic. I am too. I know that things will get worse before they get better and we are only into his first two chemo treatments ever... but it feels good to know that he is feeling alright so far. I was really worried.
we've got an apt. with a nutritinist and the pharmacist is really nice. Good.
i'm more at ease with dad going home alone now and trusting his judgement. Not that his judgement is bad or can't be trusted - I am a bit of a control freak... I'll get over it!
I have been sleeping well the last two nights. Thank goodness for that. and knowing that the second session of chemo will be when I am on vacation- so I won't miss any work. That's what I'm worried about for myself.
ok.. one step at a time - tomorrow will be step three of the first round. Yahoo!
we've got an apt. with a nutritinist and the pharmacist is really nice. Good.
i'm more at ease with dad going home alone now and trusting his judgement. Not that his judgement is bad or can't be trusted - I am a bit of a control freak... I'll get over it!
I have been sleeping well the last two nights. Thank goodness for that. and knowing that the second session of chemo will be when I am on vacation- so I won't miss any work. That's what I'm worried about for myself.
ok.. one step at a time - tomorrow will be step three of the first round. Yahoo!
Saturday, May 15, 2010
We finally have some news. Friday was a day to make appointments. Dad must get another MRI, Make a mask (for his apt to get zapped) and get zapped. all this will happen this week and next week.
The 27th of May is the day he will have a sesssion of radiosurgery at the MGH with Dr. R.
Dr. W called me on thursday at 5:45 to tell me that Dr. R and him agree that the treatment should be chemo therapy. All is a go unless Dr. P (our primary Dr.) says no. We must wait to find out when we are to start the chemo (if it's a go), and take it from there.
Both my father and I have a sense of relief upon us but yet, there are sleepless nights for both of us. Thank god for the CTV and GlobalTv websites who have the tv show I've missed during the week. and to another one of my friends who has sleeping problems too, and is almost always up in the middle of the night. Last night I went to bed without watching the end of the Boston/ Philidelphia game (this is not normal), mind you, I do have a sinus infection and on antibotics that knocked me senseless. Up at 2 A.M. until 7 A.M only to sleep for 2 hours till nine. Busy day.
Not tired yet. F tells me that I need to sleep... easy for him to say. I try and try and try- with out taking any pills (which I refuse to do!) I have not had a decent night sleep in a long while. Any suggestions? I keep saying that I will sleep when my body tells me to- however it hasn't yet. it will one day.
Dad has sleeping issues too, I could only imagine what it might be like for him. I think that he is anxioius but doesn't say much to me about it. He lets out bits and pieces but nothing substantial (sp?) to give me an indication of how he is feeling. He will eventually open up and spill the beans but until then- - - - > moving forward.
The 27th of May is the day he will have a sesssion of radiosurgery at the MGH with Dr. R.
Dr. W called me on thursday at 5:45 to tell me that Dr. R and him agree that the treatment should be chemo therapy. All is a go unless Dr. P (our primary Dr.) says no. We must wait to find out when we are to start the chemo (if it's a go), and take it from there.
Both my father and I have a sense of relief upon us but yet, there are sleepless nights for both of us. Thank god for the CTV and GlobalTv websites who have the tv show I've missed during the week. and to another one of my friends who has sleeping problems too, and is almost always up in the middle of the night. Last night I went to bed without watching the end of the Boston/ Philidelphia game (this is not normal), mind you, I do have a sinus infection and on antibotics that knocked me senseless. Up at 2 A.M. until 7 A.M only to sleep for 2 hours till nine. Busy day.
Not tired yet. F tells me that I need to sleep... easy for him to say. I try and try and try- with out taking any pills (which I refuse to do!) I have not had a decent night sleep in a long while. Any suggestions? I keep saying that I will sleep when my body tells me to- however it hasn't yet. it will one day.
Dad has sleeping issues too, I could only imagine what it might be like for him. I think that he is anxioius but doesn't say much to me about it. He lets out bits and pieces but nothing substantial (sp?) to give me an indication of how he is feeling. He will eventually open up and spill the beans but until then- - - - > moving forward.
Wednesday, May 12, 2010
The Ball is Rolling
I am amazed at the this system we are working in. We met with a brain surgen yesterday morning- he was really nice, patient and efficient. The ball is rolling.
Step One
Apt with brain surgen to zap that thing in the head. ASAP
Breathe!
Step Two
Call Chemo Dr. and set up an apt. for the beginning of treatment- ASAP
Breathe
Step three
Make apt with radiation Dr. for after the zapping (I call it that because there has to be some humor in life- this is serious shit man!) and for radiation of the total brain after chemo and brain zapping.
Breathe.
This brain surgen was a little surprised that we have been shuffled around and that treatment has not started yet. Of course he didn't want to disrespect others- I understand that- but 'disbelief' was a word that I kept thinking when I was looking at the Dr. looking at our file.
My father and I have a sense of relief, the heaviness is off our shoulders now, It was a good walk down the hill after the appointment yesterday- the color came back into my dad's face and well I could tell he was relieved. The ball is rolling,
Step Four
Make sure I have my spare bedroom set up just in case we need to move dad in for a little while.
I guess things will change now once things get started. I don't think that I am prepared for what is next to come- I will have no choice to be!!!
The Dr. explained to us that the type of cancer dad has is in fact SMALL CELL LUNG CANCER , In fact the treatment will not be that different from the other type of cancer of the lung according to this Dr. As for the PET scan we are waiting for- (the dr. called to verify if there was a request in, yes, "but we are looking at JULY" - Dr.R, the brain surgen doesn't think that we need the PET scan before we start treatment because by that time the cancer could spread somewhere else. And the chemo and radiation will have killed the cancer anyhow by then.
Why haven't we started treatment yet, is still a mystery to me- I am just the daughter of the patient, not a Dr.
We have rid ourselves of a slew of Dr's. and are left with just three. Dr. P the oncologist, Dr. R the brain surgen and Dr W the radiation.oncologist. I have confidence in these three gentlemen. Most importantly - so does my dad.
Once again our family and friends have come through for us- in little ways- and that is a huge comfort to the both of us.
Step One
Apt with brain surgen to zap that thing in the head. ASAP
Breathe!
Step Two
Call Chemo Dr. and set up an apt. for the beginning of treatment- ASAP
Breathe
Step three
Make apt with radiation Dr. for after the zapping (I call it that because there has to be some humor in life- this is serious shit man!) and for radiation of the total brain after chemo and brain zapping.
Breathe.
This brain surgen was a little surprised that we have been shuffled around and that treatment has not started yet. Of course he didn't want to disrespect others- I understand that- but 'disbelief' was a word that I kept thinking when I was looking at the Dr. looking at our file.
My father and I have a sense of relief, the heaviness is off our shoulders now, It was a good walk down the hill after the appointment yesterday- the color came back into my dad's face and well I could tell he was relieved. The ball is rolling,
Step Four
Make sure I have my spare bedroom set up just in case we need to move dad in for a little while.
I guess things will change now once things get started. I don't think that I am prepared for what is next to come- I will have no choice to be!!!
The Dr. explained to us that the type of cancer dad has is in fact SMALL CELL LUNG CANCER , In fact the treatment will not be that different from the other type of cancer of the lung according to this Dr. As for the PET scan we are waiting for- (the dr. called to verify if there was a request in, yes, "but we are looking at JULY" - Dr.R, the brain surgen doesn't think that we need the PET scan before we start treatment because by that time the cancer could spread somewhere else. And the chemo and radiation will have killed the cancer anyhow by then.
Why haven't we started treatment yet, is still a mystery to me- I am just the daughter of the patient, not a Dr.
We have rid ourselves of a slew of Dr's. and are left with just three. Dr. P the oncologist, Dr. R the brain surgen and Dr W the radiation.oncologist. I have confidence in these three gentlemen. Most importantly - so does my dad.
Once again our family and friends have come through for us- in little ways- and that is a huge comfort to the both of us.
Thursday, May 6, 2010
Miscommunication
We missed our important appointment- hence, we must go on the 11th at 9:15am. It is very confusing working with three different hospitals. I wonder if the SUPERHOSPITAL will be wonderful? Will it have all the facilties under one roof therefore avoiding many hospitals at once? I certainly hope so.
Being sick doesn't pay that's for sure; one must be a secretary, a business man and a patient all at the same time. How do people manage when they are alone? Dad has me and I have him- however, that doesn't seem to be enough. We need a manager, a book keeper and a trainer to keep us going. My word! A spiritual guide, a motivational speaker and man of the cloth... need I say more? A person with patience, a kind hand and words of wisdom - a good friend, a mother, brother, sister, aunt, uncle and cousin- need I say more? one who is sick needs all of the above and more... Most of all hope. Time is crucial and it seems like we are running out of it... by waiting. Patience.
I was reading a friends blog last night and realized that time is important - it's what you do with it that makes it so. Which is why biding time is not easy to do. Reading a good book, enjoying the company of friends and family and stopping to smell the flowers is key!
Since we have missed our appointment we must wait once again to see the brain surgen. It is upsetting and disappointing all at once. We bide our time- Dad with his new found love of reading--- "I can't put this book down" to incorporating the hockey game while reading. I will find him a book to read now that he has finished the last one. Any suggestions?
Being sick doesn't pay that's for sure; one must be a secretary, a business man and a patient all at the same time. How do people manage when they are alone? Dad has me and I have him- however, that doesn't seem to be enough. We need a manager, a book keeper and a trainer to keep us going. My word! A spiritual guide, a motivational speaker and man of the cloth... need I say more? A person with patience, a kind hand and words of wisdom - a good friend, a mother, brother, sister, aunt, uncle and cousin- need I say more? one who is sick needs all of the above and more... Most of all hope. Time is crucial and it seems like we are running out of it... by waiting. Patience.
I was reading a friends blog last night and realized that time is important - it's what you do with it that makes it so. Which is why biding time is not easy to do. Reading a good book, enjoying the company of friends and family and stopping to smell the flowers is key!
Since we have missed our appointment we must wait once again to see the brain surgen. It is upsetting and disappointing all at once. We bide our time- Dad with his new found love of reading--- "I can't put this book down" to incorporating the hockey game while reading. I will find him a book to read now that he has finished the last one. Any suggestions?
Saturday, May 1, 2010
The last couple of weeks
Still not sure what is happening- Now we need to do a PET scan - zap the tumor and decided what kind of treatment to do (Not sure the Dr, knows)
Had a really rough Thursday. Dad had a rough day too- Mostly because I gave him a hard time and for that I am sorry. Tensions are high, questions are plenty and dealing with three hospitals- nerve racking.
Appointment on Tuesday at 1 pm with the Neurosurgen Dr. L and Dr. P. to tell us how the Raido Surgery will happen... Zap it and get rid of it... Little or now side effects and well that is more than I could say for what is coming up.
Had a really rough Thursday. Dad had a rough day too- Mostly because I gave him a hard time and for that I am sorry. Tensions are high, questions are plenty and dealing with three hospitals- nerve racking.
Appointment on Tuesday at 1 pm with the Neurosurgen Dr. L and Dr. P. to tell us how the Raido Surgery will happen... Zap it and get rid of it... Little or now side effects and well that is more than I could say for what is coming up.
Wednesday, April 21, 2010
Sleep-
Last night I went to bed at 7:30 and basically slept until 7 am. I did not dream my crazy dreams that I usually have- I hardly moved in the bed. Boy was I tired. I think that when averaging 2-3 hours a night for a little while; it'll catch up to you.. I am so glad it did. I feel rested, relieved and although I am still tense around my shoulders, I could manage to breathe properly.
I was able to talk the nurse in charge of my dad's case and am glad that she is really nice. My dad said he would marry her - just by the sound of her voice- delusion, due to the cancer ;) I wonder what she looks like? She is really nice though, she took the time to answer all of my questions and went over everything with me that I seemed to have let slip though my ears after the word 'tumor'. She will be there on Thursday the 29th.
Tomorrow we have an apt. with the Radiology department at the MGH. Tuesday we have an apt. with the Neurosurg. Dr. both of which will let us know what to do- if anything. then another apt on the 29th, with the results of his 'second' opinion of his biopsy - it seems that when things stand still and then all of a sudden they start to snowball. overwhelming is an understatement.
So, I steal myself away with drinks after work with friends, with cooking things I love to cook and with Hockey- my saving grace this past season. One other thing that I will be stealing myself away with would be taking more pictures. I have let my 'photo-a-day' slip and I have let my friend down ( I am sure I have- and I am jealous that she has such beautiful photos, many more than I have now :( .) That's the next order of business. Maybe I'll post some here? What do you think?
Ok, I am babblein. I will say that although I have many acquaintences I have few friends. I will not name them because I know that they know who they are. They have inspired me to be stronger than I thought I could be and I thank them for that. These friends are always checking in on me at random times just to see how I'm holding up. I know that my father knows this too. and thanks them too! When I was younger I was embarrest to say 'I love you". I am not sure why but I am glad that I have out grown that silliness... and I must say to my friends 'I love you'.
I was able to talk the nurse in charge of my dad's case and am glad that she is really nice. My dad said he would marry her - just by the sound of her voice- delusion, due to the cancer ;) I wonder what she looks like? She is really nice though, she took the time to answer all of my questions and went over everything with me that I seemed to have let slip though my ears after the word 'tumor'. She will be there on Thursday the 29th.
Tomorrow we have an apt. with the Radiology department at the MGH. Tuesday we have an apt. with the Neurosurg. Dr. both of which will let us know what to do- if anything. then another apt on the 29th, with the results of his 'second' opinion of his biopsy - it seems that when things stand still and then all of a sudden they start to snowball. overwhelming is an understatement.
So, I steal myself away with drinks after work with friends, with cooking things I love to cook and with Hockey- my saving grace this past season. One other thing that I will be stealing myself away with would be taking more pictures. I have let my 'photo-a-day' slip and I have let my friend down ( I am sure I have- and I am jealous that she has such beautiful photos, many more than I have now :( .) That's the next order of business. Maybe I'll post some here? What do you think?
Ok, I am babblein. I will say that although I have many acquaintences I have few friends. I will not name them because I know that they know who they are. They have inspired me to be stronger than I thought I could be and I thank them for that. These friends are always checking in on me at random times just to see how I'm holding up. I know that my father knows this too. and thanks them too! When I was younger I was embarrest to say 'I love you". I am not sure why but I am glad that I have out grown that silliness... and I must say to my friends 'I love you'.
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