The time has come,' the Walrus said,

...

      To talk of many things:

Of shoes — and ships — and sealing-wax —

      Of cabbages — and kings —

And why the sea is boiling hot —

      And whether pigs have wings.'

I'm finally ready mentally to consider what my options are for the end of my life.  As Canada now has legal assisted dying, I have that option available to me.  I also have the options of hospice care although I'm not totally sure what that would include.  There is also the option of unassisted suicide but I can't see me going that route.  I think that next week it will be time to set up an appointment to talk to Amanda and/or Josh about these options. 

As with so many other aspects of this disease, I seem to have a weight lifted once I've decided on something.  I feel sad that the disease has brought me to this place, but relieved somewhat to have finally grabbed the bull by the horns.

I'd like to stay in my home as long as I can without becoming a burden on anyone.  I realize that I need assistance with a multitude of things and I am lucky in that I can pay someone to do some of the things needed.  I have Brenda to come clean the house and she will do things like change the bedding and do my laundry while she is here.  Home Care staff are getting paid to do their part so I don't feel like I am a burden to them, it is their job to look after people like me.  Kaede I am able to pay to do my shopping so I don't feel too bad about asking her to get groceries and stuff for me.  I am also thinking that B should be able to help out a bit more around the house as he is living here rent free.  It's going to be time to have a chat with him soon about what I expect and what he is willing to do.  We are going to have to have the 'talk' soon about my wishes for the end of my life.  It's going to be a tough one but we can't avoid having the conversation forever.

When I can no longer manage to stay at home on my own, I need to find out what my options are.  I'm thinking that having a staff stay with me would be much to costly for me so will probably need to go to a place in the city.  I guess that once I'm at that point, maybe it won't bother me as much to give up on my last bits of independence.  As I said, Amanda and/or Josh can fill me in on what I can expect.

Another thing that is bothering me is the need to go to Dr. appointments.  As my oxygen requirements are so high, just thinking about having to go for an appointment is very stressful.  I have a couple of appointments coming up next month and will need to contact them to find out if we can talk on the phone rather than me going to their offices.  To go to the office I would need at least 6 tanks for the trip there and back as well as whatever number of tanks for the duration of the appointment. (in other words, I would have to take every tank I have with me and try to find some way to manage them).  I think I mentioned in my last post about the oncologist appointment cancellation - The Dr. is on board with my cancelling the CT scan and his follow up appointment.  If the cancer does rear its ugly head again, treatment will likely cause more problems than it will solve.  My other appointments are for the hematologist and with the ILD pulmonologist.  I also think that somewhere down the road I will have to deal with seeing a urologist for my kidney and liver but I'm going to try to ignore that for now.

Something I should be thinking about is going to bed at decent times.  I've been spending much too much time dozing in my chair instead of going to bed.  Need to work on that issue.  For example, it is now 2 a.m. and I just woke from a mini nap again - didn't go to bed at all last night.

I decided it is time to start to use the walker in the house.  It does make it easier to get around.  Between that and using the narcotic whenever I need to do something, I should be able to make my life a bit more manageable.

Talk again soon!

Christmas Spirit Missing

Christmas is just a few short days away and I just don't seem to have any Christmas spirit.

I don't want to think this way, but I keep thinking that this will be my last Christmas and I'll be with my mom and hubby next year.  That I'll see them again has been the only silver lining (although not the best one) I've been able to find for this disease.

NSIP is taking and taking from me.  I'm no longer driving my car, I'm stuck in the house 24/7 tethered to the machines, taking narcotics without worrying about getting addicted and needing assistance with all but the most minor activities.
I am not a candidate for lung transplant because of the cancer so my options are only a natural death or euthanasia.  I'm leaning towards the latter so I have at least some degree of control.
Cancelled my cancer x-ray and the oncologist is on board about the reasons why.  He feels that there wouldn't be much he could do if the cancer does come back.  Also cancelled my nephrology appointment.  If my kidneys and liver do decide to cause problems, I'll deal with that then.

I worry about my son and how he will deal with my death - his dad's death hit him hard and I want to know that he has a solid support system in place before I go.

At least I can still crochet and hopefully my craft room will get useable in the near future so I can make cards. I've been busy making Christmas gifts for everyone in my family so they will have something from me when I'm gone.  Don't know if they will appreciate them but all I can do is try.

Good news is that I now have some money.  Got my pension finally and now my car is paid off.  Have the money to travel - now if only I could figure out a way to do so.  Ain't that a hoot!  Maybe I'll give B some cash for Christmas so he can at least get out of debt.

This post hasn't been so much cathartic like previous ones but I figured that before I started writing it.  Guess it is a good thing that no one reads my posts this one is especially depressing.  Wonder if anyone will read them when I'm gone.

Good Company and Bad Days

My sister and her daughter were here this week to help organize B's stuff so my living areas are accessible.  They did an awesome job and my niece did some baking as well for the Christmas party.  I'm so glad they were able to come and help me out.  I really appreciate it!
ME brought 3 of her dogs and Kari brought hers so there were lots of dogs around the house as well as all the activity.  Majik mostly stayed hidden in my bedroom but was starting to venture out yesterday.  They are gone now and the house feels empty, back to just me and the 2 critters.  B is at work.  

Health-wise I haven't been doing well.  I run out of breath with the littlest of exertion.  Have a new drug to take that is supposed to help with this but it doesn't really seem to be helping except when I take a lot of doses of it (can take it up to every 10 min and the most I think I've taken in a day is 8 or 9 doses).  Have the nurse practitioner coming on Tues to see about increasing the dose and hopefully getting me some relief.
Finding it very depressing that I keep dropping in ability to do things - really hoping things take a turn for the better and soon!
My cough is back although still not as bad as pre-prednisone so I guess I'm ahead of the game with that.  Wish ME and Kari hadn't had to see me at my worst.  They were awesome at bringing me coffee, meals, etc.  
Got Laura to visit with them a couple of times and another niece (Colleen) was able to come by to see them as well.  I enjoyed listening to their chatter.  Not doing a lot of talking myself as too damned out of breath!  I so wanted to join in but had to realize the penalty would be too high.

Have an appointment at the Cross on Wed.  I sure hope I am more able to move about by then or I may have to cancel.  I can't move the appointment so will have to suck it up and go or wait until mid Jan for a rebook.  Now to find someone who can take me.

Short post today.  Nothing else to add.  Talk another day

Assessments and Non-Health Stuff

I have now had all my home care assessments.  Primary nurse, OT, RT, and nurse practitioner.  Confusing as I'm not sure exactly what I should expect but it is really nice to know that I have the support in place now.
Will be starting on a new med to help me think I'm breathing easier and have a walker that accommodates 2 tanks (but is heavy as hell so I'll need help loading/unloading it in/from the car).

Had the O2 provider here again and am now in the process of waiting for the results of my funding appeal.  Was to have had the RT arrive within 48 hours of the blood gases but the weather and scheduling didn't work for him to get here on time.  As a result, my funding was denied (again).  May have to go for another blood gases and again get him here within the 48 hours.  Aggravating - what are they going to do - remove my oxygen - and how long will I last if they do?  When he was here, he dropped off a mask so my poor nose could get a break.  The higher oxygen flow meant my nasal cavities felt like they were on fire!  The mask is a bit of a nuisance but it gives my nose a break which I really appreciate.  Will be getting another machine that will piggyback with the one I have as my oxygen needs have increased again when exerting myself (such as going to make a coffee or go to the bathroom - you know, major exercise!)  Hopefully I'll get the machine on Monday.

Have been trying to contact my GP for the results of my lab work a couple of weeks ago.  Kept running into a not-so-cooperative desk clerk who either didn't pass on the message to the Dr. or didn't explain why I don't want to come in to the office.  Finally got a clerk who was having a better day but the Dr is away for a couple of days now.  Hopefully she will call me on Monday.  Apparently I have a cyst in my kidney and one on my ovary.  May have to go for more testing - yuck!!  The oncologist wants the ovarian cyst watched but the kidney one is probably not going to be a problem (other than making my urine have blood in it).  Will wait and see what happens with these cysts.

Not health related - my son has decided to take me up on my offer of moving in with me for a little while.  He got himself in some financial hardships when unemployed and this will help him get out of the hole.  Not much else I can do to help him out.  He's allergic to my cat so he may have to start taking allergy meds.  Hopefully we can keep the cat out of his room so he has a safer place to go.  Much as I love him, I'm not about to get rid of my cat or dog (personally, I don't think he would have any issues if I got rid of the dog but he does like the cat)!  In the meantime, my craft room is inaccessible (and I haven't been able to make many Christmas card so may end up sending after Christmas cards to the people on my list instead) and the rest of my house is full to the brim with his stuff and mine.  Trying to fit 2 homes worth of stuff into one small mobile home is ending up with me going crazy!!  I'm so used to having things where I want them and now they are everywhere!  I sure hope that he is able to start organizing things better soon - I think he has almost everything here now.

Christmas is fast approaching and I've been keeping my fingers busy with crocheting gifts for everyone on my list (and then some).  As I don't know what next year will bring, I've decided to make items for many of my relatives and friends.  Trying to make things that are practical but some are kind of fun too.  (I won't go into what they are just in case someone decides to read this page).  Going totally bonkers with my newest production - something that should be fairly simple just isn't cooperating!  I'm on my 2nd attempt, having ripped out the almost done item when the first try didn't work and now I'm thinking I may have to start ripping this one out too.  Don't know why I have such a problem making a hat that will actually fit a head smaller than Frankenstein's!

Guess that about wraps up what I have to say today.  Talk to you again.

Great New Dr and Some Not-so-good News

Things have changed again with this damned disease. 
At the end of October I've got to see my new pulmonologist and her team and I must say I'm impressed!  Finally someone who will answer questions and even put some answers out for questions I didn't know to ask.  I saw the Dr., her nurse, a dietitian and the resp tech.  This made for a long appointment but I left much more knowledgeable than I entered.  Laura accompanied me for the appointment - I'm truly blessed to have such a good friend!  Dr Kalluri started me on some medications and sent me for more blood work.  The resp tech wasn't able to get me to go through all the paces for the spirometry as I just couldn't breathe well enough.  Dr. Kalluri showed me what my CT scans look like and even my uneducated mind could see the differences (the ones that the prior pulmo said weren't much different).  The difference in the CT scans before and after the radiation for cancer were SO different!!  I was also referred to home care and given a binder full of information (some of which I still can't push myself to read as it is to do with end care stuff)
The down side to the visit with the ILD (interstitial lung disease) clinic was that I was told I am now end stage of the disease.  I didn't push exactly what this means but intend to do so next time I see her as I think I've got my head wrapped around it well enough now.
The meds she put me on have greatly helped with the cough - it was almost completely gone but now that I'm decreasing the amount, I'm noticing it is coming back a little.  If it only comes back a little, I'm still considering it a win!  Just hoping that  those horrid coughing spells where I start to feel panicky about not being able to breathe don't come back - they are NOT fun!
Needless to say I fired the prior pulmonologist!!  Won't be going back to see him again.
I spent last Friday night in emergency departments because with very little activity my O2 sats dropped to the low 70's (not a good place to be).  They did multiple tests and checks to see if they could figure out what had caused the drops but couldn't find anything.  No new embolisms, infections or damage to the lungs showed up.  The pulmo I saw there said it is likely just the nature of the beast to change.  So home I came without any new meds or treatments other than a dose of antibiotics given in the hospital and for follow up I am just to see the clinic as scheduled.  I also had my level of treatment assessed and explained quite well.  I won't be having any life saving treatments like tubes, ICU, chest compressions, etc. but will be OK with medications and the such to make me more comfortable and treat the treatable symptoms.  This was one of the things that was in the binder of info from the ILD clinic but had to be completed by a Dr. after discussion with me.  It now resides on my fridge in case of my needing an ambulance or something and will travel with me to Dr appointments and the like with the rest of the binder.
For home care, I have now had 2 of the assessments done - first was the nursing assessment last week and today I had the resp tech assessment.  The assessments were pretty thorough and intense and I feel like I'm in good hands.  The assessment today will result in me starting on some meds to reduce my anxiety and to try to fool my brain into thinking it can breathe easier.  Sounds good to me although I'm not nuts about taking any opiods.  Next assessment will be with the OT but that won't be for a while as she is very busy.  There is an option for another assessment but as long as I'm able to maintain most of my independence that one won't be happening - in fact, I can't even remember what this one is called.
Wednesday I had the O2 provider here and he upped my O2 settings to the max allowed on the machine.  A pretty big jump in my mind, going from 6 lpm to 10.  As a result of that huge jump, my mind hasn't been in a good place with thoughts of dying creeping into the forefront fairly frequently.  Big downside to the upped O2 is that my tanks won't last very long at all when I go out so I'm foreseeing that I will be even more housebound.  Good thing I didn't wait until my computer died before replacing it as it is my window into the world around me.
Oh, and if this wasn't enough, I have blood in my urine probably caused by a cyst in my kidney that may require further inspection and one on my ovary that the oncologist wants checked out again in about 6 months to make sure it hasn't changed.  Someone just stick a fork into me and call me done!!
Today I'm in a bit better place mentally but still struggling.  I really need to find a better place for my mind to reside than in the dark places it seems to want to stay in lately.  Part of me wishes I could jump on the bandwagon of religious faith as it seems to help so many believers.  But I just can't get there so need to find an alternative option.  Finding something to help me get through this is becoming important as I just don't like the whiny, sad, woe-is-me person I'm becoming and want to be able to see the glass as half full instead of half empty.  If any of you have any suggestions, I'll be very happy to listen!
Wow! this was a long post.  Guess I shouldn't wait so long between postings in the future.
Signing off now until we meet again.

Time Running Out?

I was thinking about how long it's been since I was diagnosed with NSIP.  It was November 2015, almost 3 years ago.  Research I did on Google after diagnosis (a really bad idea, by the way) told me that I had an average of 6 to 13.5 years to live.  Once I got over the being scared shitless, I figured that I would last much longer than that - after all it was caught early, wasn't it?

Then I had the cancer and the subsequent treatments may have caused more fibrosis (no one has actually said if it did or didn't, just that it was a possibility).  Since the treatments for cancer, I've started needing oxygen - first for when I was exerting myself and now almost 24/7.  The dose of oxygen is fairly high from what I've been able to learn by doing my own research.

After the initial research I did on the disease when first diagnosed, I decided not to research on Google any more as all it did was scare me and make me depressed.  The pulmonologist would keep me informed, right?  WRONG! I have really learned very little from the pulmonologists and have learned most of what I know from people with the same and similar disease on a few Face Book pages.  The more I learn from them and sites that have been referred to me (such as the Mayo Clinic and other supposedly reliable sources), the more I ask the Dr. here and the more I'm dismayed by his lack of response.

Treatment options have not been discussed unless I bring it up with him and questions basically get the stock answer that everyone responds differently so he can't really give me an answer.  The only treatment option that he brought up was to tell me that after the cancer, transplantation was no longer an option for me.  I had to request a referral to the pulmonary rehab program (which he touted as being such a great program after I'd requested it but had previously never mentioned).

I have learned more and had better treatment by the ER Drs.  Thanks to them, I discovered I had a pulmonary embolism and follow up treatment was set up to deal with this.  Also it was the ER Dr. who got me started on oxygen therapy when the pulmonologist hadn't bothered to call me back to discuss my difficulty breathing.  When I informed the pulmonologist about the embolism and the need for oxygen, he didn't give me any reason to think he was concerned about either of them.

Enough ranting about his lack of treatment.  The reason I started writing this post was because of the first sentences and how I got to thinking that I've survived 3 years of my projected 6 to 13.5 years.  What is to come in the next years?  Will I plateau, will I get worse, will I go into remission?  

Unfortunately, my crystal ball has quit working so I can't predict which way it will go. I do need to somehow get out of this funk that I'm in and start to live the life I have left instead of wallowing in self pity.  Presently, I've been counting on the ILD specialist who I will see next month to answer all my questions.  This expectation isn't realistic and is totally unfair to her as I'm pretty sure she doesn't have a working crystal ball either.

I don't know why, but just writing this all down makes me think a bit clearer.  I'm not sure how I'm going to do it, but somehow I'm going to stop with the pity party and start really living.  I guess I've just got to take the bull by the horns and start fighting!  I think a good start would be to get off my fanny and do something that kinda scares me - go shopping!  I just have to plan things better so I know I won't run out of oxygen but I can and will do this!  I'm sure that once I get this stepping stone out of the way, I'll be able to advance to other things - like taking a road trip all by my self.

Next post will be all about my shopping trip.  Maybe even tomorrow.

Life is short, eat the damned dessert!

An Educational Whine Session

Just a quick note to get some stuff off my chest.

Good news is that I got my appointment with the ILD specialist and it is earlier than I expected (Oct instead of Nov).  Hopefully I'll have some answers then.  Just from the work up, I know already that she is going to be thorough.  I have to go for blood work - tests I've never heard of before and there is one that the lab tech probably won't have heard of either.  I also have to fill out a food diary as well as the usual list of medications, etc.  Also, there will be a 30 to 60 min phone interview prior to the appointment which itself will take about 3 to 4 hours!  Wow!!

The smoke from the B.C. fires has been weighing heavily on my ability to get out and do anything.  Apparently on at least one day recently, the pollution index for Edmonton was as bad as that in China.  They are forecasting rain in B.C. in the next few days so hopefully that will help settle the smoke.  

I was going to go for a road trip.  Was thinking of going to Ontario and the Great Lakes as I really want to go to the ocean but with the smoke, going west isn't a good idea.  The Great Lakes, I figured would be a good option.  I then decided that for my first trip with the oxygen, I wanted someone to come with me in case I needed help with something.  Then I'd have a better idea of what I need to know to travel with the tanks and could strike out on my own.  Couldn't find anyone to come with me so that idea was quashed.  Then I decided that I would head out to MJ to see ME and maybe we could do a short trip from there.  Not happening, at least not this weekend, as the smoke is thick there as well.  Here the AC keeps the smoke out of the house for the most part and ME doesn't have AC so I decided to wait out the smoke here.  Very disappointing that I had to cancel.  I'm going stir crazy stuck here in the house!

I haven't been in a very good place mentally lately. Trying to wrap my mind around needing oxygen has been a tough one.  It seems that every time I turn around, I'm coming up against something that I used to be able to do without batting an eye, that now I either can't do by myself or have to figure out a new way to do it.  One of these things is my love of road trips by the seat of my pants.  I love to go on a trip with a general direction in mind but how I get there (and if) all depends on whether I turn left or right at a corner.  You never know where you will end up and what you will see on trips like this.  Hotels are chosen at random and the stay may be one night or more if I like the area.  No more can I do this kind of trip.  Now I need to ensure that I know where the closest oxygen supplier is and can only go as far as what oxygen I have in the car.  I suppose I could still choose hotels at random but if I know when and where I'll be on a specific day, I may as well pre-book so I can get a cheaper deal.

I recently read an article by a Dr. about transition periods for those with lung disease.  He explained that there are 4 big transition periods for the person diagnosed with a disease.  The first one comes with diagnoses, the second comes when oxygen is needed for exertion, the third is when oxygen is needed 24/7 and finally the fourth is when the oxygen needs become such that high flow is needed.  
This totally makes sense to me.  For example, when I was first diagnosed with the disease, I googled the heck out of it and was terrified by the results of my searching.  After a while, I settled into a form of acceptance and got on with my life.  Now that I'm on oxygen for exertion, I have to learn how to do things like travel in the car from point a to point b, how not to get the tubing twisted around things in the house, and the like.  That part is, although a pain, something I can eventually adjust to (at least I hope so).  The hard part is the loss of independence and the fear.  I'm afraid to go out because I don't want to run out of oxygen while out, afraid that I will have one of my shortness of breath episodes in public, afraid (to a small amount) of what other's think of this old woman with the oxygen tank in tow.  Loss of independence covers the gamut of needing help to get groceries. needing help around the house and the loss of the ability to pick up and go whenever I want.  Some of this loss of independence is due to the fears previously mentioned but most of it is because I have no strength to do some stuff and other stuff makes me so short of breath it's scary.  I can't imagine what it will be like when the third transition comes - I won't even contemplate it - I am having a hard enough time trying to get through this transition!  As to the fourth, I'm not even sure what it is.  If you are interested, here is the link to the article.  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6045697/  Reading this made me feel like I'm not alone and others have had/are having the same difficulties as I am.  I just wish I'd had a Dr. like him from the start.

Well, my short note turned out a bit longer than planned.  It was just going to be a whine session but I added some education for you as well. Thanks for listening.

Toodle-oo til next time.

OMG!! I've been negligent.

Just realized I haven't put anything on my blog since before the cancer treatments were over.  My bad!!
Some changes have happened since then.  

The radiation treatments were completed without a hitch and no real side effects except being extremely tired and possibly some more fibrotic tissue being formed.  I was lucky to have 2 awesome people with me for the last treatment and they convinced me to ring the bell.  Apparently, you are supposed to ring the bell away from any people - poor Laura got the damn thing rung almost in her ear and it was LOUD!  Sorry, kiddo!
Continuing on the cancer theme, I slowly got over the tiredness and pretty much back to normal (I'll deal with the fibrosis later).  In June I had my first follow up CT scan to see if the cancer has been beaten and it looks good!  The tumour isn't being active and has shrunk somewhat (they didn't tell me how much it had shrunk and I didn't think to ask).  Next appointment is in December.

Now to the NSIP which hasn't been behaving well.  As I mentioned, there was likely some more fibrosis developed due to the radiation.  As a result, I started coughing even more and getting short of breath with less exertion.  This continued to slowly get worse over time.  
Then one day in July, I went for supper with my friend and after supper I went to use the facilities.  I don't know what they had used in the bathroom but there was a VERY strong chemical smell in there.  I'm wondering if they hadn't fumigated or something as it wasn't really a cleaning chemical smell.  After that, I had a huge coughing fit and my breathing declined more rapidly.  I tried calling my pulmonologist on the following Tues as it was getting worse, but he never returned the call all week.  Eventually, I took myself to emergency (mostly for another problem but to get my breathing checked as well).  Long story short, I ended up going home with an oxygen tank that night and they set me up the next day with the home machine and tanks.
Now I'm trying to get used to having this darn tubing following me around in the house and trying to figure out how to work the tanks around any outings I go on.  Grocery shopping, as with any shopping, has become a hassle and requires planning (how long will I be gone, how many tanks do I need, etc.)  But on the silver lining side of this cloud is the fact that I can breathe SO much easier and my coughing has decreased to almost gone when I'm on the oxygen.

From beginning of July until next week, I've been attending Pulmonary Rehabilitation.  This is a twice weekly program where for the first hour they teach us things like the importance of exercise, how to travel with oxygen, how to properly use inhalers and other meds, etc.  It has been an informative program.  The next 2 hours are spent in the gym using the equipment under supervision of the awesome staff.  They teach us how to use the machines, push us to do more, help when we are falling behind.  I've discovered that I really don't like the treadmill but like the stepper/bike thingy.  Actually considering buying one for myself so I can work out at home. After the program, I'm totally exhausted!

I'm presently waiting to hear when I will get to see the ILD specialist.  I requested a referral to her from my present pulmonologist (the one who didn't bother to call me back for over a week).  I wasn't positive that the referral was sent so I called her office and was told that they had received the referral and I would likely have my appointment in November.  Long wait, but not unexpected.  I'm putting all my hope in this new Dr. as I've heard nothing but great things about her.  Hopefully after seeing her, I'll be much wiser about this disease, the treatment options and prognosis.  Everything I've read and everyone I've talked to (I'm on a couple of FB pages with others who have this and similar diseases) say there are treatment options to slow the progress of the fibrosis and to clear up the cellular component.  To date, I haven't been offered any treatment options.

On a more exciting note, I'm planning a road trip after the program is finished next week.  Hopefully I'll be able to head out on the weekend but still have a couple of hoops to jump through to arrange for oxygen along the way.  There has been a lot of smoke in the air here for quite a while now which keeps me indoors.  I initially wanted to go to Seattle area and the ocean but decided that staying in Canada would be much easier with the oxygen (I'd have to buy oxygen if I went to the US) and going east would get me out of the smoke rather than driving into it by going west.  Also the altitude of the mountains might play games with my breathing.  I'll leave that for future trips and keep my maiden voyage simple.  I'm also hoping I can find a travel companion but it isn't looking like anyone can come with me.

OK, this has turned out to be a long yammer so I'll stop boring you now.
Will write a note when I get home from my trip.

Just breathe!

Cancer update and feeling sorry for myself (a bit)

First the cancer update
I've had my first 6 treatments of radiation and 2 more left next week.  I don't remember if I mentioned that the original plan was for 4 treatments but this was changed to 8 at 1/2 of the dose of radiation.  This is because my tumour is very close to the major vein and artery to my heart so they don't want to chance damaging them.  Good idea, says I - I kinda need those blood vessels!
First treatment was last Friday then 5 treatments this past week.  Once a day, every day.  The first few treatments hit me really hard - extreme tiredness and after the first 2, extreme cold as well.  Thank heavens the cold was only after the first 2 - it was hell!  I'm also very grateful that the tiredness let up for the last 2 days.  I still get tired after doing almost nothing but at least I'm not falling asleep every other minute.  Only 2 more to go then I get to ring the bell.
I drove myself for the first 3 but after getting home on Tues, I knew I couldn't do it again - it was really hard to stay alert for the last part of the drive home.  Luckily for me, Branigan wasn't working this week so he was able to take me for the last 3.  I'm hoping the weekend off will rest me enough that I'll be able to drive myself next week but as I'm still easily exhausted it's not likely going to happen.
Another wonderful side effect (possibly partially the NSIP acting up) is the cough.  Horrid, hacking, exhausting, breath-taking and sometimes gob producing cough.  Sometimes I feel like I'm going to puke, sometimes I get a stomach cramp from the strength of the cough and sometimes I get a headache and/or a sore throat.
Poor Kayla just can't understand - she wants to comfort me when I'm hacking up my last breath but I can't abide her near me then.

That some of my friends and family regularly checked on my well-being and were available for me should I really need them really helped and I love them for it.  I really need to find some way to show my appreciation.

With all the utter exhaustion and coughing, I've been varying from a little low to majorly low mood-wise.  

Pity Party Time
This is where I get to feeling sorry for myself so fee free to skip this part, I really learned who my true friends are. I've only told people that I really thought were good friends and of course some of my family that I have cancer. But there are a some of those 'close' people who haven't contacted me since I told them that I have cancer and this hurts - a lot!  
I'm thinking of doing a bit of an experiment after I finish my treatments.  I'm thinking of posting a picture of the Bell of Hope and announcing that I rang that bell today (or whenever).  I wonder if anyone (other than the few people who I know will) will congratulate me or if that announcement will fall on deaf ears as my little hints (some not so little) that I'm unwell have gone unnoticed.
As if my mood wasn't low enough, I was watching a YouTube video about final send offs and it made me wonder if anyone will remember me when I'm gone.  Some of these send offs included hundreds of well wishers and mourners and I wonder if there will be more than a handful of people when they put my ashes in the ground. I really need to stop myself from watching videos like this when I'm already feeling down.
Pity party over - got cheese to go with my whine??

Love this blog - I get to vent my feelings to no one in particular and I always feel so much better afterwards.  My mood now is SO much better!!  

I believe alien life is quite common in the universe, although intelligent life is less so. Some say it has yet to appear on planet Earth. 
Stephen Hawking

Damn Everything!

Just a note to get it out of my system.  Feeling low today.
  
Pissed off about everything and nothing.  Damned cough that makes my throat sore, makes me pee a bit (thank heavens for pads!) and leaves me feeling exhausted.  Damned NSIP for existing!  Damned cancer! Sorry that others have to go through these dreadful diseases and that some don't make it.  Damned CRPS and sorry my friend has to deal with the constant pain.  Damned me that I can't do anything to help her or make these diseases disappear. Damned sun for shining when I feel like shit! Damned dog for barking at everything.  Damn feeling out of breath when doing just basic things like getting dressed, making coffee, living.  Damn Dr. for not telling me anything and damn me for not knowing what to ask.  Damn God for allowing these diseases and all disease to exist! Basically just damn EVERYTHING!!

Being on the FaceBook support pages have been helpful in allowing me to vent without being judged and for teaching me different things about the diseases.  But they are also depressing when I read how some don't survive and that some have way worse problems than I do.  I suppose I should feel lucky that I'm doing better than some on the NSIP pages but instead I get scared wondering if this is what I get to look forward to.  On the cancer support pages, I see that some have survived the disease for years beyond what the Dr's thought they would, some who are now cancer-free and these give me some hope.  Flip side - those who don't make it, those who are very ill, and scariest of all is the reports from people who thought they had beat it only to have it reappear!  I'm going to have to decide if the benefits of the pages outweigh the cons and if I should continue to visit the pages or leave them.

Regarding the cancer, I got my dates for the mock-up and first treatment.  I go for the mock-up (dry run or, as my sister put it, dress rehearsal) on Wed and the first treatment on Fri.  I wasn't particularly anxious about the treatments until I got the actual date then the anxiety set if. I'm nervous as shit!  I will get the rest of the schedule for treatments when I go on Fri.  

I really want Howard to be here with me as I continue on this journey but he was snatched from me and Branigan. (another reason to be pissed off at God).  I also find myself wanting my Mom!  Guess we can grow up but we never stop needing our mommy.  

I had determined (before the cancer made its appearance) that I was going to treat the NSIP as a just another unplanned road trip and accept whatever comes will have its own form of beauty and awe.  With the cancer, I kind of forgot about that decision.  I had acquired a sense of peace from making that decision and I really want to get that back but I'm having a tough time getting there.  I guess I just need to get through the cancer treatments and go from there.  Maybe I need a new analogy for this journey through life.  Anyone have any suggestions?

Feeling a little better now that I've gotten my rant and fears out.  Will talk again soon I expect.

Just a Note and a Vent

Just felt like writing down what's up today. 
Health-wise I'm OK, mood is a little down but manageable.  I was able to get some stuff done around the house today without running out of breath big-time so I guess it was a good day. 
My weight has been climbing again. Don't want that to happen so guess I should try cutting back on my intake a bit.  (this said after eating pizza pops for supper lol). 
Talked to the radiation oncologist today.  He sounds very pleasant and was patient with me although I'm sure he has a lot of other things he could have been doing instead of talking to me.  My chest discomfort on the left side is to be expected as the tumour is at the top of my left lung and may be pressing against the surrounding muscles, etc.  He didn't know why I would have any discomfort on the right side. 
The pulmonary hypertension he said I should discuss with my pulmonologist.
My dates for treatment were being discussed as we spoke and they are trying to figure out how to fit me into the schedule as my treatments will be a bit longer than most.  (silly me, I didn't ask him why)
He said I should be able to book my trip around the end of April/beginning of May.  Any side effects of the treatment should be over by then.  I looked up the availability of travel at the end of April and it is all sold out so beginning of May looks more promising.  I don't want to leave it any longer as the price hikes up a lot for the summer season.
As the evening progresses, I find my mood is getting lower.  I can't help but think that I've been dealt a losing hand - first the NSIP which will eventually kill me as it has no cure, then the cancer.  It's kind of funny that when I was told by my GP and then again by my first pulmonologist that 'at least it isn't cancer', my internal reaction was anger as at least there is a possibility of beating cancer.  When I said as much to the Drs. they seemed surprised at my reaction.  Low and behold, a year plus later and I'm told I have cancer.  And it does seem that this cancer can be beaten with a few radiation treatments.  The down side to the treatments is that they may cause the fibrosis caused by the NSIP to worsen.
I feel like I'm living on borrowed time and don't have any options to stop the clock!  100% mortality with the NSIP and a 20% chance the cancer won't be cured by the treatments.  It is so aggravating that I don't have control over my future!  I'm not ready to give up by any imagination but the specter of death is always hanging over me these days.
Yeah, I know....sucks to be me, now pull up the big girl panties and get on with life.
Venting here is always cathartic for me.  I used to be a little bit sad that no one ever read this blog but now I'm happy that they don't.  That way I can feel like I can write whatever I want without hurting anyone's feelings.  I can be as bitchy or tearful as I want. 
Enough for today.  Talk again maybe tomorrow or whenever.

Changes

It's pretty amazing how quickly my health changes.  I had a couple of days where I had trouble breathing and was really cranky.  Then suddenly I felt much better!  Well enough to go grocery shopping with my son.  I overdid it a bit though so I am very appreciative that he helped me a lot.  He packed the groceries at the store, brought them into the house and even put most of them away for me.  Love that young man!  After the shopping, I had a 2 hour or so nap and still went to bed fairly early for me.  

Today I feel great!  Breathing isn't too bad and my mood is really good.  Today I really feel like I'm going to beat this cancer!

Working on the cards for my sister's Red Hat Society group.  When I started doing these cards, I thought they would bore me to tears doing 24 of the same cards.  But once I chose the colours to work with and decided how I was going to go about colouring them it became really easy.  Even fun with the extra decorations I put on each card.  The reason I bring up the cards today is because they have been a good thing for me.  No thinking involved but the action of colouring the ladies on the cards got me away from thinking about the cancer all the time.  Something I really needed and I even ended up making more cards than requested! 
Now the cards are nearing completion, I'm trying to think about what project I will take on next.  I should be done the cards in the next couple of days and still have another week or so before treatments start.  I don't want a project that will take a ton of thinking but something similar to what I was doing for my sister.  Maybe I'll start working on some boxes of cards for Christmas/birthday/whatever gifts.  I really liked the ones I made at Christmas so may make more like them.

It really feels good to be in a great mood today.  Here's to hoping the mood continues!

Just a Yammer

Just realized I hadn't posted this.  So it may appear out of the correct timeline.
Feeling pretty low today so thought I'd see if writing it down would help.  Sometimes it does.
This waiting to hear if I have cancer or not is driving me to feel more and more depressed.  I start thinking that I should get everything in order for should I croak in the near future.  Maybe give away/sell much of my craft supplies and dejunk all my belongings to having only what makes me happy and is necessary for daily life.  Thing is that I feel so low, that I don't really have the energy to do anything about it.  I try to shake myself loose of this feeling but it keeps creeping back.
I know I should find something good to think about but all I can think about is the NSIP and the possibility of cancer.  Both of these things can potentially end my life.  I'm just not ready to die yet!
Thankfully, the wait for the biopsy will be over soon then I just have to wait to find out the results.  I'm hoping the Dr. will call me asap to tell me yay or nay.
I say I'm not afraid of dying, and for the most part, that is true.  I am afraid of being sick and dependent on others and part of me is afraid that if/when I do get close to the end, I'll be left alone as family and friends distance themselves from me to preserve themselves.  I know how that works, as I've done it myself.
I've heard so much about the NSIP patients getting pneumonia from a simple cold and almost dying from it that I'm almost afraid to go out in public.  On the cancer side, everyone knows how hard the chemo and radiation can be on the body.  I don't want to be bald and I definitely don't want to feel or be sick.
I hate feeling like I'm in the dark about it all!  The people on the NSIP pages I follow seem to know so much more about the disease than I do - I feel like the Dr. is avoiding telling me anything.  Is this because he doesn't think I can handle it or because he doesn't know himself?  If he doesn't know much about the disease, I would hope he would send me to someone who does.  Maybe I should ask next time I see him.  If I hear the stock answer that each case is different one more time, I think I'm going to scream!  I'm not stupid so I realize that everyone responds differently to any disease but surely he can give me some ideas of what to expect in the future.  Not telling me isn't going to make the disease go away and I don't think I'll start being a hypochondriac overnight.
At least the surgeon who I'm seeing about the possible cancer has been straight with me and has told me what my options may be and what the complications may be as far as he knows now. 
Enough complaining for now.  May enter more later but I do feel a bit better getting it off my chest.

Cancer update

I've now been to the Cross Cancer Institute for my initial treatment plan visit.  I have Stage 2 squamous lung cancer.  This is a pretty common cancer and usually found in people who smoked.  Unfortunately, I smoked for almost 30 years and I guess the 12 years I've been smoke free doesn't really count.  
I don't understand a lot.  For example, in all my research a single tumour that hasn't spread and is under 5 cm is a Stage 1b.  If it has grown into certain parts of the lung, it becomes a Stage 2 but the Dr didn't say anything about that when I asked.  Also the reports I have copies of say my heart warrants further investigation but nothing was mentioned about that or other things that were mentioned in the reports.  I don't have 100% confidence in the Dr who told me the info as he is a resident and has yet to finish his specialty.  I got the impression that he is fairly new at the Cross but I could be wrong.
Because of my NSIP, they have ruled out surgery as an option and the next step will be steriotactic radiation.  They figure 4 doses of this mega radiation will kill the cancer - the percentage that was given to me is 80% that it will work.  I'd much rather have been told 100% but you gotta take what you're given.  All I can do is hope that it works and I don't have to go to the next step which I imagine would be chemotherapy.
I've been letting my family and long term friends know.  I held off until I had a definite diagnosis.  Everyone has been so supportive with many offers to help where needed.  I'm feeling lucky to have such great friends and family.  
A couple of people have told me to stay off Google but my need to know what to expect is too great and there is so much information out there!  I know not to believe every word I read and hear but at the least it gives me the questions to ask.
Hopefully Monday I will have more answers than questions when I go for my pre-treatment appointment.
As to how I'm holding up.  I had my crying jag when I got the final diagnosis and have been tearful a bit off and on but I'm glad the waiting is over.  No one wants to hear they have cancer, but knowing is so much better than wondering.  Now there is a plan of action and the Dr. sounded pretty optimistic about my prognosis.  I've had periods where I'm mad as hell - mad at Howard because he isn't here to help me through this, mad at cancer research for seeming to drag it's heels at finding a cure, mad at myself for all that smoking, and just plain mad!  A lot of time is spent in la-la land where I just sit and think without really thinking about anything.  Guess I'm just absorbing the fact that I have cancer and that it isn't just a zodiac sign.
I try to get my mind off it by doing some crafts but my attention span is a bit on the short side.  Everything I do, say, hear, and see has the potential to make me think about the cancer.  Talk about a 1 track mind!!  I've pretty much come to terms with that and it's OK if I think about it a lot.  It is a big deal and I'm allowed to wallow a bit here and there.  Only for another month or so though.  Once the radiation is done, I can get back to normal (well not totally as I'll have to wait a couple months to find out if it worked)!  I just hope my friends and family can understand this and not stay away because I talk about the cancer so much.  Talking about it makes it seem less threatening somehow.
I'm on a couple of FB pages for people with lung cancer and have been getting lots of information and support there.  I know that everyone's story is different and we all react differently to treatment but it is heartening to hear that someone else has gone through the same thing and is now cancer free.  On the flip side of that are the sad stories of someone who has lost the battle with the disease.  Even these stories teach something.
Well, I think I've rambled on long enough for today.  I'll post again when I know more.

My Elephant Got a Whole Lot Bigger

To start, I hope you all had a wonderful Christmas season and the New Year is shaping up to be an awesome one for you.

I had a wonderful Christmas.  Had my Christmas Eve party again (first time since I moved away) then spent the day with great friends.

Unfortunately my New Year has so far been a roller coaster ride.  As I said in my last post, I was to have another CT scan.  I had this in the beginning of the month and about an hour after the scan, my Dr. calls me that he wants to see me the next day.  Oh Oh, can you see something unpleasant coming?  I figured that maybe the NSIP had progressed and he wanted to start me on meds or something.

I was concerned, but not overly but I took my friend with me to the appointment as a 2nd set of ears just in case.  It turned out that my NSIP hadn't changed much at all but there is a new kid on the block.  I have a 3 to 3.5 cm mass in my lung.  The Dr. said he felt pretty certain it is cancer but sent me for a PET scan to get a better idea and to a lung surgeon to discuss the results of that scan.  He felt that as it appeared to be a localized mass, then the surgeon could cut out part of my lung and that would be that. Ok, now I'm scared but I can deal with a surgery and maybe some meds or something.

Fast forward 2 weeks and I've now had the scan and am seeing the surgeon for the results.  Again I have brought my friend with me for support (who is absolutely amazingly awesome for coming with me when we had to leave home at 6:30 am to get there!).  The surgeon (who is a dashingly handsome and very young man) tells me that it is almost 100% certain that it is cancerous.  Good news is that the growth seems to be alone and hasn't spread to other areas that were scanned and it is in the upper lobe and my NSIP is mostly in the upper lobes so basically they'd be chopping out the diseased portion and leaving the healthier.  Bad news (other than the C word) is that the growth is very, very close to my heart (yes, I do have one) which could mean the option of surgery would be out.  There are a couple other options, one being mega radiation directly on the tumour but again because of the location this one might be out as well. That leaves chemotherapy and less intense but more wide spread radiation.  Because of the NSIP and the location of the tumour, the surgeon intends to take my case to a multi-disciplinary meeting were a group of specialists will discuss my options.  This makes me feel better because it will no longer just be 1 Dr.'s opinion but a group of them.

Now I have to have 3 more tests.  An echocardiogram to make sure my heart is functioning properly, a biopsy to rule out the slim chance that it is an infection and not cancer (infection definitely gets my vote!), and another CT scan - this time of my brain to make sure the cancer hasn't spread there.  I'm interested in if they actually find anything up there - some days I would swear there is just a starving gerbil running the show.

I'm trying my best to find something positive about all this but am having a hard time doing it.  Only thing is that I'm losing weight without trying.  Hell of a diet plan, huh!

I should know a lot more in a couple of weeks after all the testing is done.  In the meantime, I'll try to keep busy to keep my mind off this huge elephant in the room.