Dear Friends

Another post  see the light of day on 2nje.com. I choose to call it "Dear Friends".  Whether  you are a new, old, long lost or best friend you are dear to me. So in the spirit of my last post of giving thanks to you, I decided to write to you again.  My purpose is to tell you my whereabouts and also to give some clarification to the message sent to some of you through "the fight for Tonje" by Kristina yesterday.


This last week has been interesting. The picture can change daily and pain management has been a part of  how pretty the picture comes out. We were not doing so well at it for a few days so changing my regime from pills to IV pain management was a planned and correct decision  this past weekend. The opportunity to use the wap/ button  for this was the main reason to put it in a few weeks ago. So, no major procedure was needed, just put the needle in and I was on a liquid morphine. Since this is a new mixture and all, I had to be adjusted first quite frequently but there was no drama involved other than the fact that I have still not befriended any needles as of late. 


To clarify the message sent, there has been not been any counting of days of or hours. We don`t know what the future will bring, but my family and I are coping with this as we have been in the past.  Yes, there was lit candles when Kristina was here,  just because, and for no particular reason, and yes, we talk softly, hang out being cozy in my very comfortable bed when I have my girlfriends over :)


So my dear friend, I leave you again in thanks for you being you and for all that you have given me. I will again spend time with my family and enjoy the time we have. 

I love you!

Tonje

Thank you!

I have not posted in a while and this will most likely be my last post. I still stop by facebook to follow everyone and the site, but I don`t feel like there is much more for me to share here. The good spirit of making up "stories" is gone. I am slipping into a state that is not pleasant, and is best kept to oneself. But for those of you who wonder what the current situation is,  I  stay in bed sleeping most of the time and am awake only a few hours a day. I don`t eat solids and don`t get out of bed  more than a few minutes a day. The hard truth, things are going downhill pretty fast. I mostly want to be by myself. The little time I have energy to reach out I wish to reserve for family.

This blog has been all positive for me. I thank you for spending the time reading, participating and contacting me in various ways to send love and care. You have given me great strength. Thank you!

Love,
Tonje

Monday blues

I am happy to not look back at today too much, but I thought I would give you a recap.There is only 20 min left of feb 22 as I type this, and I don't mind at all.
So, today started with waking up at 6am with the routine urge to get air out of my system, as in vomiting air. This has become routine and is just something that is part of my day now. About an hour later my mom and I perform my morning medication routine. I eat cereal after the medication cocktail to get some food in, and for my stomach to have something other than pills to deal with. By 8ish we are in the car driving to the hospital. It is cold, snowing and generally as unpleasant outside as the day in general.

I get my bloodwork done by an elderly lab tech woman that does fine, but not great at punching a needle into an arm. She uses a butterfly upon my request which for the uninformed is a tiny needle that makes it easy to find the vein and in general makes life easier in the world of bloodwork. The woman manages to make it hurt a bit and had poor routine of what comes first and second etc. I am getting picky with these people now as their skills are varied. Some do it in 30 sec and you hardly knew you were there, while others don't know the difference between the butterfly needle and a knitting needle.

Anywhoo, off I go to the oncology floor and are met by my new physical therapist/ accupuncturist. I have had 2 sessions with her so far and am really glad she is part of "my team". I think I have mentioned before that I am followed by and working with a team tailored for my needs. The team consists of cancernurses, anesthesiologist, phys therapist, specialist doctors, social workers etc. I can't imagine the headaches of doc/nurse surfing without them.  I talk to the phys. therapist  for a while and set up appointments. We end up not having time for a session today, but she will be at my house later this week. I love that these people make housecalls.

Next,  my oncologist and I talk about my choices moving forward. I have opted not to continue with chemotherapy. The doctor agrees that this is the best option for me but I had to make the call on it. There are just too many negatives compared to positives. It sounds like giving up, but has nothing to do with that, the picture is complex. There is really no chances of me having a longer lifespan by continuing chemo at this point. It is all about quality of life and pain relief now. Chemo has not proven to help me on either, nor has the tumor shown any response to chemo. We talk, cry and discuss other topics and then we go to my nurse to start a new regime of "anti calcium" treatment. With my system being out of wack I have way to much calcium in my system which can cause all sorts of issues. So, I get an IV and are given a bag of fluids and this magic anti calcium portion. I go back in 2 weeks to see if it has helped and to continue treatment.

I am in general a bit fringy the entire day. I know that they are taking the stitches out of my neck and chest from the port surgery and I have a nervous "hangup" on it. I think it was 6-8 stitches or so. Sounds silly, but right now a simple poke of some sort can make me cringe and cry. I have just had enough. And as my nurse said, there is just a need for something physical to get it out. 3 months ago I would not have thought twice about what went on today, but now, I cry worse than a baby needing a bandaid on their knee after a little scrape. Actually getting the bandage off to get to the stitches was the major issue of the ordeal. It hurt like hell! the skin is super thin, black blue and purple and the glue had attached itself into the skin much like superglue does. Ouch! Saline solution, patience, tears and a hand to hold did help. I must have squeezed my poor moms hand to pieces when taking out the stitches, there was not a lot of physical, but huge amount of mental pain coming out of me through the little physical pain I felt.

After the port ordeal I met a new Doc which is also part of "the team". She will be following me in regards to pain management. She is a specialized anesthesiologist doc. New decisions are brought to the table. She wants me to have 2 needles poked in on each side of my spine and inject alcohol to block the nerves in my upper abdomen. It is called a celiac plexus block. More poking.. I cant deal with it today so will save the decision for another day.

To end the hospital day we stopped by the pharmacy to grab another bag full of pills. I feel like we always walk out of there with another bag of pills or medications of some sort. Except for a few issues, I am glad we have our system where you don't have to pay for medical services after the first 1850 NOKs. Of course I need a secretary to keep track of it all, mom is in control, and believe me it is a lot of work to be on top of the paperwork, a lot!

I slept for a few hours in the afternoon and had Tina over for a visit (nice part of the day). Was in more pain than usual in the afternoon, but tried to medicate my way out of it.

Now, that did not sound too bad ? I guess one had to be there with my mental and physical being to fully understand the crappyness of  it all.  I have no desire for you to feel that way so let's just be happy that the day is over and that the calendar says Tuesday February 23 now..

Fashion disasters

First, I would like to thank all of you for the support and good thoughts sent my way since my post yesterday. I am still hanging in there as I have been for the duration of this ride so far. I keep telling myself that the diagnosis has not changed, the news is however a bummer of a deal since I am getting less time with the people I love so much.  I dont want to be dragged down by it just yet as it would  mean loosing even more time by not enjoying the time that I do have.

But I hate being the person to make people cry, so I will talk about something else today.

Ok, hospital fashion. Just gotta hate it. I need to start taking pictures of the garment collection, but I will try to explain the joy of these garments as pictures would have to be x-rated. There is of course no spring, summer, fall nor winter collection in this line of attire as far as I know. Let me start with the everyday all in one wear. It's name comes from the simple fact that it is all seasons, male and female, as well as nigth and day wear all in one. It is your basic PJ and I have only seen it in blue so far. Hospitals like blue. It comes in 2 pieces, a button down shirt and pants. The button down shirt comes in a comfortable cotton fabric. The arms are always a bit too short and the buttons are a bit too far apart. The ones I have been handed so far I could easily wrap around myself twice, hence I assume one size fits all to be true..I weigh in at 54 kg right now so you get the picture.  Now, wearing a tent size button down, with buttons too far apart you end up easily exposed. I can not under any circumstance go walking around in the hallway or go to the kitchen/living room with this stuff on,  my boobs could easily get the idea to peek out at any given time.(yes I have heard of bras, but they are not always applicable in my situation) I dont wear the tops  unless I have to and only if I am being shipped out of my room in my bed with covers tucked up to my chin.

The all in one  PJ  pants are much of the same, the legs are too short, and have the shape of McHammer infamous pants, 20 years (?) or so later! Walk around in those and you look like you had an "accident" in your pants. Nuff said! Nope, not putting those on either unless I have to. I am sticking to my pink victorias secret  "lucky pants" that Kristina gave me thank you very much!

This past Friday I was introduced to a new part of the collection. Let's call it the "white collection". I was going in for my port surgery and upon arrival in the morning I was handed the white collection. All items in comfortable 100% cotton, no complaints there, and nice to see something else than blue. First there is the underwear/panties. I am unsure if it can be called that, but it is the purpose so I guess you just have to work with me here. One long piece of cloth  a bit narrower in the middle, and I still assume the one size fits all applies by the size of the cloth. It is equipped with elastic bands attatched in 2 corners and buttons in the other 2. On second thought, cloth diaper might be a fitting description. Fortunately I could tighten the elastic enough to prevent the thing from falling off, especially handy with the style of the top that goes with it. Yes, you guessed it. The top is open in the back! The first thing I noticed was the difference compared to the ones you see on tv from American hospital series where they seem to be quite long gowns. The one I got was short,  it barely covered the cloth diaper thing in front type of short. You then tie a string at the back of your neck and that is it.. open ass for the world to see the cloth diaper.

To help cover some of this fashion misery, I was handed a robe. This was especially thoughtful of the nurse since I was waiting for my surgery in the hallway and had to walk through it to get to my bed from the bathroom. The thing was of course offered in a deep blue. Hospitals love blue. I think the thing used to be of some sort of terry fabric, but it had taken on a new lifeform after the use and abuse it had gone through. It was short and almost unwearable due to its extreme static electric features.
For the icing on the white collection you also get socks. Think 2 pieces of  white fabric sown together in the shape of a sock. I looked at them once and decided they were optional and never looked back.
For your enjoyment picture me walking down the hallway doing the static electric dance/walk trying to hold up my diaper panties.

Now for the Pièce de résistance. Back in November I did undergo a nice array of less than comfortable exams and one of them was a colonoscopy. They have a special item in the hospital fashion collection intended for this purpose. The pants are of course offered in blue. Hospitals love blue. But I think for once they offer size alternatives. Legs are too short regardless, and with the waistband elastic size I would guess an extreme small percentage of the population would actually fit the size I was handed. The special feature of these pants is the practical open ass. I am not sure why these are part of the collection, you could easily cover up the patient in other ways to keep warm and have them feel less like Chinese 1-3 year olds wearing no-diaper-poop-and-pee-pants . Privacy was thrown out the window  at the word colonoscopy in the first place. Only viable explanation I can think of is for the Doc to be spared from the horrors of looking at too much hairy, ugly ass all day.

I am sure there is more to the collection that I have yet to experience. I mostly stick to my t-shirts and sweatpants when there. Who can blame me..

The story I don't want to tell.

Had the port put in on Friday and an interesting weekend, but I might get back to that in a later post. The story today will be about my appointment with my oncologist. I was scheduled for bloodwork at 7:45 am and doc appointment at 8:45. I quickly realized that I was going to miss the 7:45. Getting up was just not an easy task. Due to some of the events over the weekend I am pretty much unable to move, I have to get help to do tasks like getting dressed. After the long process of getting up we just made it to the hospital to get bloodwork done by 8:40. Oh well, the most important thing is to make the doc appointment anyways.

Now on to the appointment. This was the day were my doc would tell us about the success rate of my treatment so far. The analysis was done on basis of the CT scan I had done a week ago where they look at progress of the tumors and whatever else that makes sense to the docs I guess.  Unfortunately the message is as bad as it can be in an already bad situation.  The chemotherapy treatment I have been through so far has not yielded any satisfactory results. The decision has been made not to continue with the chemo administered so far. This chemo coctail was pretty much the only alternative available with somewhat  proven lifeproloning results. As you know, my chemo treatment has not been for the sake of a cure, as there is none, but treatment was started to buy time in the measurement of months. The news I got today means that the opportunity of buying time has been taken away. The straight forward way of saying it is that I will die sooner rather than later.

Now, is there really no alternative? Well, I can start a different but more of a shot in the dark type of chemo with less chances of any effects. We set up another appointment to talk about this next week so I would have time to let it all sink in and think about what I want to do.

So, I can stop treatment, work with the team to stabilize pain etc to a level where I have as many good days as possible before my body shuts down.

Or I can try out the other type of chemo, I will not have results on progress for another 2 months.  Chemo will be putting my body under serious strain and potentially be in bed sick for the duration of the treatment. As a result I will either potentially gain a few months of life by trading it in with feeling sick on chemo, or "loose" 2 months of quality life to feeling sick if it has no effect.

Is it just me or am I given pretty bad alternatives?

Short and sweet

Hi! A short update to keep you up to date. After my hospital visit that I covered in my last post I have been hanging out at home. Had a CT scan this Monday but except for that things have been slow. I am not on chemo, but I don't feel great either. Most of the day is spent laying down with nausea, sweating like a pig or in general just feeling sick.Blah.. In the evening  I am up and am able to eat and drink in a more normal fashion, next day, repeat the day before, not too much to report on and not a great deal of fun. A couple of things coming up, Friday I go back to the hospital to have a permanent port/IV put into my chest and Monday I get to hear what the Doc thinks about the CT scan.

So, short post. Hope you are all doing well. Now, please, take a moment, think of something wonderful in your life and smile :) Have a great day!

Playing games

Had a fever on Thursday and after a short trip to my regular local doc to take a test, I ended up in the ER due to fear of infection lurking around in my sorry ass body. Going to the hospital did not go as smooth as the pre arranged procedure the hospital agreed to on paper with their own head of oncology. I am supposed to call the ER, say I'm on my way and they should be ready to send me directly to the gastro floor upon my arrival.. Well, not so much.. The call was made, but nothing had been done when I got there.There was no one in the waiting room so I guess they had a coffee break instead of prepping for me.  The waiting game began as they tried to figure out what to do with me (insert Mom being the warrior here to let them know what was what). Of course they could not for the life of them manage to send me to the right place, so I had to go through ER procedures. Room was set up, me in bed, Nurse 1 comes in and starts to ask questions and perform standard tests (bloodpressure, temp, etc). Doc 1 comes in and asks the same questions and some more and performs standard tests for the situation. Nurse 2  start doing my blood work. We are talking a bunch of the normal blood work tubes and then bottles, yes actual "bottles" of blood and they were not small either. At this point they are all doing the green gowns and mouth protection thing, I guess I am in isolation until further notice. Then of course it is time for changing of the guards. Nurse 3 comes in asks the same questions as previous nurse/docs. Doc 2 arrives with the same arsenal of questions and redo the tests Doc 1 did less than an hour ago. Greeat.. Nurse 4 start me on antibiotics before they get my test results back from the lab to not waste time. Gowns come off once first tests come in so at least I don't feel like an alien being poked anymore.  I am told that I can expect to spend the night. Now they figure I should be sent to the gastro floor for safekeeping over night, Imagine that!.. After a while, off I roll down the hallway in my bed.. Oh, wait, I was scooted by xray first to see that there was nothing to be seen in my lungs as the 2 docs had just listened to them and concluded there was nothing suspicious there. But better safe than sorry I guess, which  is good, no stone unturned. Now I'm shipped off to where I was supposed to be hours ago.

As usual I am shown into a 2 person room. Insert warrior Mom here, battling for a single room for me. 2 min later a single room miraculously appears and I settle in. A single room in the hospital makes all the difference in the world sometimes.  Fever is long gone, but infection levels.from the tests are not ay-okay. Oh and let us not forget that nurses again come in and redo the tests previously performed in the ER.

All in all I have been in contact with a minimum (I lost count) 14 different docs and nurses throughout the afternoon. Following the prearranged procedure I would have met 5 and been resting in my bed 3-4 hours earlier. Note so self: A followup on this "procedure" is in place for future executions. Have to say though that I really like the nurses and docs that I meet at this hospital, and they do a wonderful job, but I do have favorites of course. I feel like I am in good hands and that they genuinely care. Makes a big difference too, as my previous hospital experience a few years ago was of the complete opposite kind and  that can be like living hell.

Getting back on track with the story, Doc 3 arrives in the afternoon and I am going through the questioning again but a bit quicker run through this time. Was informed of the plan to have me on antibiotics and run more tests in the morning. Phonecalls are made and my Oncologist instructs no more chemo for me until further notice.

Let the party begin with the antibiotics game. I get high doses of the stuff every 6 hours and sometimes 2 different kinds at once. I just pop pain meds and am in for the ride. Weeeeeeeee "#¤%#&?.  I basically feel like crap from the stuff..I just go with the flow and play the games they throw at me through the afternoon and night. Friday is also spent in my hospital "suite" playing the antibiotics game every 6 hours. The extension pack is in place as a pre-game "painkiller" game and the "anti nausea" game, as well as the post-game "take-a-beating" game. It is all planned out to ensure best possible results/less beating in the post game.

I eat very little and the 2 real meals I try to eat ends up as porcelain throne donations before the meal is finished. I do feel OK  in between the battles so I watch TV and play around with the in room entertainment unit as well as sleep with my friend morphine. I see 2 Docs during the day and they are not willing to let me go home just yet, expect to play the IV antibiotics games in the hospital at least until Saturday. I guess I need better scores in the "ultimate blood work" game to get out. In the afternoon, 3rd Doc comes to visit upon my request. He is part of the specialist team that act as an on call support team for patients like myself. I had just met him on Monday, but I was in need of his expertise already on Friday. He helped me better understand how my medication mix works and how I can alter things as I go. He also made changes to the meds I take and replaced some with better alternatives for me based on my experiences. I hope his expertise will help me out with my fight through these games as they keep coming. Another night follows with 2 games played during the night (midnight and 6am being main game time).


After making a real effort to eat breakfast and keeping it down I do feel better Saturday morning. And after pleading for mercy the doc lets me wait to play the noon "antibiotics" game until the scores are in. I got to play the "ultimate blood work" game only so I could prove myself. Scores don't come in until 2pm, and even though he is not convinced of my recovery I get a break. I go home in the afternoon but am told to come back in first thing in the morning on Monday for another score assessment.  Also of course with strict orders of coming in if the body is demanding such actions.

So I am home, feel OK. After all I am antibiotics game free and chemo free so I should be feeling better. And my bet is that next week will be a week where my body gets to rest... or at least I hope so..

Voluntary beating

 I started chemo again yesterday. Round 5. Started feeling real yucky last night, no fun. The works with the hunchback walking, feeverish, puking feeling and fetal position. Was hoping the reaction would wait a day or two, but no such luck. Got  up this morning to my daily ritual as of late of  bowing before the porcelain throne, and am waiting for the mighty codeine to make it all good  right now.. The next rituals of the day are  less than pleasurable too, but will leave out the details.
No wonder I was really dreading going into the hospital yesterday.. It is like going in for a voluntary beating.. That was me feeling sorry for myself.. Hope you are having a better day!