debbie067-blog

[debbie067-blog]

One year later.

Well, hasn't this been just a fine and dandy year! One year ago yesterday, Aug 25th I was able to come home from RJH in Victoria.

I just reread my posts from last year, and I have to say, it is a good thing I wrote things down because I do not remember half of it. I was very surprised to read about how sick I was. I remember being in the hospital, but not much more than that. Amazing how your brain protects you from evil painful things sometimes.

The last year has been nothing but better! My first few weeks at home were rough. I was admitted to NRGH for a week in Sept and again in October for dehydration and malnutrition. Before being released in October, it was determined that I could finally have some food/drink by mouth. This helped tremendously in the healing process. It was not long after that I was able to be off all pain meds. Pony was convinced that I went through a tough withdrawl from the fentanyl, but again, I don't remember.

Things just keep getting better since then. Eating and drinking came slowly. Getting enough calories/ nutrition was a huge struggle.  I spent a lot of time with my speech therapist, learning new strategies and exercises to help with the swallowing process. There were a lot of disappointments and frustrations. I was determined to get back to golf by Sept. Didn't happen. I was determined to have a Thanksgiving dinner, didn't happen. Thought I would have a dinner out for my birthday in Nov, didn't happen . Planned on a great Christmas dinner, didn't happen.

Some very joyful time too. Our first grandchild , Everett, arrived in November. Both the boys were here for Christmas Day. My very dear friend Bev came for a three week visit in Jan/Feb. We were able to go visit the kids in California in Feb. And the icing on the cake! I was determined to be eating solid food, before Everett and I made it!! So out of all the goals I set for myself at least I was able to meet one of them.

I was not able to have my feeding tube removed until June 13th.!! So much for my thought that I would only have to have it for one month! Even with the tube, I had a hard time getting enough in me to gain or maintain my weight. They wouldn't take it out until I went at least two weeks without using the tube and not losing any weight. I was doing well for a bit, then ended up with a throat infection that set me back two weeks.

My weight  dropped a total of 68 lbs. Of which I have regained 2 lbs. Some of the weight loss was needed, but it was a hell of a way to do it.  Not sure I need to put any of it back on, but it is still a struggle to not lose anymore. 

Food is still an issue. Meat especially is a challenge. Good steak, prawns, scallop and mussels are easy. Nothing but the best expensive stuff for me! Burger, chicken, rice and any sort of spice are totally off the menu, for now. Makes meals a chore but I try not to let it get me down. To compensate, I am eating some foods that are on my allergy list. So far, it hasn't been too bad, but I am being really careful.

I had a follow up PET scan in November, that came back NED ( no evidence of disease) and my check ups have been extended now to alternating  ENT and Oncologist visits every four months. They both do a camera scope when I see them. The protocol does not call for another PET or CT or MRI unless they see something unusual or I am having issues. I feel great, maybe not as energetic as before, but that, apparently is normal.  So it's the old no news is good news!

I suppose I have rambled on enough. I needed to put closure to this wild ride I was on. I have learnt so much in this past year, information that I hope none of you ever need to know, but I am here if you need. I am putting this last years troubles behind me, the good times in a special memory bank, and moving forward.  Thanks for supporting me on this incredible eye opening journey.

Deb

[debbie067-blog]

Homeward Bound Aug 25th

Sorry the last couple of weeks have gotten a little disjointed. My memory is not that clear and days just seem to run together. Especially with no internet in the hospital for 3 weeks, and no TV and able to sleep anytime anyday. It kinda mixes up your days.

But I do know, that I did make it home from Victoria and am all tucked back into home in Parksville as of Aug 25th!.

Being home a week, has been ok. A bit of a struggle with somethings. But so nice to be home in so many other ways.

I am on a 24 hr a day feeding tube. This makes it really easy to decide what's for dinner, and to get my meds down. What it isn't easy for is that my formula needs to be changed every 4 hours. Day and night. 

We are managing not to bad. Pony is being really good at keeping track of what I have taken when and when the next needs to be ready.

We are not sure, but think that this needs to carry on for another month. I guess I will depend on how I feel.

Still not 100% certain if our extended is going to cover the food.  we got a confirmation letter for all the supplies.. IV Pole, syringes, bags, all that stuff, but it did not list the food specifically. and of course it is the long weekend , again, so I will have to call them on Tuesday.

I have ventured as far as the Dr office this week. Not getting out and about as much as I thought I might. I am getting tired really quickly. Also , can't talk much at all, and it hurts to swallow, so going out and socializing is not high on my to do list these days.

I was doing really well up to yesterday ( Friday Sept 1)  even thought I could get to go visit the kids at the camp ground or go for a trip to the boat. But, no.. I took a couple of steps backward yesterday and was nausea and vomiting again. So, I am back down a day or two.  My throat is raw and very tender. We were just planning on cutting back o the pain meds, but that needs to be re planed again.

Anyway, thanks to all of you out there that have sent cards and good wishes. I really do apprectiate the thoughts.  Thanks for being patient with my blogs. Hopefully I will just need a couple more.

Going for the idea of one a week now.  Hopefully it will be all better not backwards !!

Later

Deb

[debbie067-blog]

Friday Aug 18 - Thursday Aug 25th.

Well, This last few weeks has gone by very quickly for me, in some aspects and in some, it has taken an eternity to get through.

Week Aug 18 - 25th

As hinted at by Pony in his last update for me, things did not go as planned.

Every time I think I am going to get out of this place something else goes side ways.

I will be in for another week. Trying to figure out what it is that keeps making me sick, just as I start to feel better.

This time the speculation is that too much was changed at one time. Apparently my body doesn't like change.  Once we cut back on the direct tube feed on some things ( vitamins/etc) I started to feel better. So, lets do this the logical way! One thing at a time, see if you can find the "one" thing that my body is rejecting.  But no, we need to change everything at once. the night before I go home. So, Wednesday release has not been marked to Friday.. lets hope.

Other than not being able to get the proper nutrients and being frustrated at the pain level that has just sky rocketed because of the irritation to my throat, this has been a pretty long sleepy week. I am glad for a quiet private room that is allowing me to sleep anytime of day or night I need.

Who would have thought I would need to be in the hospital a week after my treatments are done!

[debbie067-blog]

Thurs. update 2

Well a good day for Deb. I was with her most of the day. The only tube she had attached was for her stomach feeding and of course the occasional pain medication. She felt pretty good, no nausea, no fever, no IVs, no required transfusions... all good for at least today. It was nice. She even got feisty and wanted to argue about Jubilee building locations! But when she started nodding off while we played crib this evening, without dropping her cards, I figured it was time she hit the sack for the night. Dr. visit tomorrow for the big decision on if she gets out of there or not. Only 3 more rad treatments to go. Hoping she has a good night and another day like today tomorrow.

[debbie067-blog]

Update from Pony

It's Thursday the 17th. Things have not gone as we thought. Early in the week Deb was suspected to have contracted pneumonia so had to have xrays and tests etc. This precluded her being released, and they also cancelled her final chemo which was supposed to be yesterday. She had a few days with a lot of vomiting earlier in the week and they had to slow down the food input to her stomach tube. It was determined she did not have pneumonia, but while that determination was being made she got feverish again which had to be looked after, meaning no release. Because of issues with her blood work, she required a blood transfusion yesterday, and may have had more blood last night after I left her. This is a result of her not getting enough specific nutrients. She is in quite a bit of throat pain and the pain med (hydromorphone I believe) really hits her hard. She told me she has had some hallucinations. Some of her text messages get "interesting" so she is not answering too many. She can talk softly, but can't even swallow a bit water now. The Dr. will determine tomorrow if she can be released, but I'm not counting on it until her blood work looks good and she can hold in reasonable amounts of the liquid food she's getting. She needs to be on the IV still for hydration, vitamins and chemicals that her blood is lacking. On the brighter side, she got to have a shower yesterday and get her hair washed again which cheered her up somewhat. And counting today, only 4 more radiation treatments to go. The road is rough, but she will beat this.

[debbie067-blog]

It's been a while since Deb last posted. That's because she has been in the hospital without WIFI for the entire time. Lots has happened but bottom line is she's OK now to a point. She had lost too much weight because she can't swallow much of anything and she had zero energy of course so they first started IV hydration, vitamins etc., then a through the nose tube to the stomach to get her going on "real" food, then on Wednesday they took that out and put in a through the belly stomach tube. Now they have to build up stomach input quantity slowly and will end with a '3 meals a day' regime at which time she can be released. That should be Sunday, but her next chemo is supposed to be the 14th so I suspect they will keep her in for that. As long as there's no nasty side effects from the chemo they will release her the next day. So, we anticipate she will be out of the hospital next Tuesday in time for radiation treatment # 30, and only 5 to go after that. She's on some pain meds for the throat which is getting rather sunburned inside and out. I think she is bored and frustrated more than anything but she's hanging in there, my little trooper. There's lots of other details, but this is her blog so you'll have to wait til next week (c;

Friday August 11th - Note from Pony

[debbie067-blog]

Friday August 11th - Note from Pony

[debbie067-blog]

Friday Aug 4th

Just a quick update. I went for my hydration today. That went well.

Had an appointment with the DR. The nutritionist that I saw earlier this week was in contact with Dr Valev. They have decided that I am not getting near enough nutrients or water. So... I will be admitted to the hospital today, for a feeding tube insertion. I will be in for about a week. With no internet, I will probably not post anything until I am sprung free.

The feeding tube isn't all bad. I have two weeks of treatments, then after they are done, it is suspected that the side effects get worse for yet another two weeks or so. That means that I am looking at , at least a month before I can start to think about getting into a normal eating pattern. I can not do this for another month. I am tired, I cant eat or drink enough, and I don't want to cause any more side effects or have other body parts shut down.

As much as it would be nice to breeze thru the last bit, I am not too stubborn to ask for help. Am I scared.. damn right I am... am I confident I am doing the right thing... damn right I am.  I guess that is all I can say.

I will update when I can, to let you all know how I am doing. But in the mean time... catch ya later

 Deb

[debbie067-blog]

Thursday

This week sure disappeared in a hurry. I again, haven't done much. I went for IV hydration on Wednesday, and will go again tomorrow for more.

I am not eating or drinking near enough, so, we will have to have a conversation tomorrow about alternatives.

I am not in a lot of pain, but my throat seems to be very narrow. I can only get tiny sips of water down at a time and food has to be really soft and coated. Even getting soup down is a struggle. I am trying though.

I have a bit more energy today. Not running marathons or anything, but at least I have stayed awake for more than 2 hours at a time.

I am thankful for my basement suite. Apparently is it pretty warm out side, and I have been hunkered down in here, not noticing the heat at all.

Getting home on the weekend will be a challenge, with the traffic and all. Our plan so far is for me to have a nap in the afternoon, after my appointments, and then maybe do a midnight run home. I don't think either of us could handle the slow traffic in the heat. We will see what happens, but we do have options.

I am looking forward to being home for a few days. hopefully I will be able to enjoy some of it and not sleep all weekend.

Stay cool everyone

 Deb

[debbie067-blog]

Tuesday Aug 1

I had a very long day today. My apt with the Dr was at 1:30. He was running a bit behind and I didn't get to see him until 3:40! Ya, I was a bit annoyed!

The appointment did go ok. He is pleased with how my mouth is holding up and overly impressed that I am not taking any pain killers. My throat is sore,but not hurting. He kept asking me "how often are you taking t3's" and if I was self medicating with anything else.. sorry folks, nothing for pain, yet. even last week the chemo dr gave me sleeping pills... don't know what for, I definitely don't have a problem with that!

What I am having trouble with is eating and drinking enough. I thought I was doing ok, but apparently not. They are going to set up an IV hydration appointment for me for tomorrow, and then re-assess on Friday. They don't want me going home for the long weekend and end up in some sort of distress.

On my way home, I stopped and bought an assortment of different 'water supplements' a couple aren't too bad, but not sure if its just hype or if they actually do some good. I had to promise the doc, that I would try harder.

I had a cup of chicken soup for supper, hopefully that counts as something! towards my water count.

[debbie067-blog]

Monday July 31

Wow, what a wasted day.  I could do nothing but sleep all day. I did manage to make it to my appointment, but nothing else. I slept all day and all night. I am assuming I am not eating enough to keep up my energy levels. I will try harder tomorrow.

[debbie067-blog]

Sunday July 30

Today was a pretty good day! I actually had a bit of energy and used it all.

I was able to shower, do my hair, get dressed and put on full war paint, in order to go do some shopping!  We are on the hunt to replace our dying dishwasher. I managed to get through 4 stores before having to bail, but pretty good.

After being out for a couple of hours I needed to sleep for 3. That seems to be the trade off these days.

So consequently nothing at all exciting to report for today. I did have a good day though, and that I am thankful for. All of my throat and mouth sores seem to have eased up, so eating , when I have the energy, is not such a chore. Lets hope it lasts for a bit.

[debbie067-blog]

Saturday

I had a pretty decent sleep last night. On of the drugs I take causes flushing and warmth, so I would wake up in a bit of a panic thinking it was a fever, but managed to get a good few hours sleep.

I only lasted a couple of hours after getting up,  then had to go for another nap. I got up around 3 and am feeling pretty good right now. I am going to try to have some dinner. Pony bought me a couple of scallops. I hope I can taste them..and get them down. I am on mostly liquids right now. anything like oatmeal and soups have to be extremely runny. but for a scallop I will try my best.

I feel the worst of this chemo round is done. I will still be tired for a couple of days, but it gets better everyday.

I am having a bit of difficulty getting myself to talk, not so much that it hurts, but more I don't want to make it hurt.

Hope you all had a better week than me, and you are out there enjoying this beautiful weather.

That's about it for now, I guess. So til next time...

[debbie067-blog]

Friday

Friday morning I had to wait for the Doctor's visit at 11 before I could know if I was going home.

I was feeling a lot better, but still a bit unsteady. The porter came and took me to my radiation appointment, my speech therapy appointment and my nurses appointment then back to the hospital. I forewent my nutritionist appointment as I had a visit from the dietician on Thursday.

Back to my room by 9:30. All I want to do is go home and have a shower.

The doc came in and went over all my blood work and test results. "nice shirt' doc ( we call him that because he always Tommy Bahama shirts and I see so many drs that I have to keep them straight somehow!) nothing was negative. Even my lung xrays were crystal clear ( which as an ex smoker, was very good news to these ears) so he let me go home. With a list of must do's, but home I am heading.

It was a couple of days I do not want to repeat, but on the upside, the chemo has still not made me nauseas in the least, and my throat is sore, and it is difficult to swallow some food, but for the most part it isn't too bad. No pain meds needed yet and I have completed 19 of 35 so more than half way. I feel I am on the home stretch, even thought I still have three weeks and three days to go.

We made it home in regularish time on Friday. The malahat wasn't too bad, all things considered. But, it was home, nap, shower, snack and then back to bed. Chemo really makes me tired and listless. But I just listen to my body and sleep when I want. I am not clock watching, just going with the flow.  

[debbie067-blog]

Thursday

Thursday morning I had an early radiation treatment. So that meant the the porters came and got me at 8 am for my journey to the cancer clinic. I got to go through all the secret tunnels to get there. Under roads and everything. Quite the infrastructure they have going on.

Back to my room for a delightful, nonedible breakfast, a nap and then another wake up call for more blood work and another trip through the tunnels for x rays.

I spent most of the day again, trying to sleep while those around me were trying to do their jobs. I do appreciate the attention they were taking and not letting anything go unchecked, but man, sometime all a girl needs to do is sleep!

The drug regime after chemo is pretty intense and then there are the three mouth washes I need to use, 20 min apart, before I eat, so that takes some planning and preparation.

Thursday was all in all a very tiring day. By 1 am everything was looking good, all the blood test and xrays and urine tests were back and they could not detect any source of the infection. So I was left on my own to sleep from 1 - 5 am! whoo hoo!

another day in the books! 

[debbie067-blog]

Wicked Wednesday

Well, what a turn a day can take in just a few short hours.

Wednesday morning I was up early, showered, had breakfast, tidied up my little place and packed an over night bag for my hospital stay. Out the door by 8:00, yes AM!!

Radiation went fine, I was chipper and in good spirits. Checked into the hospital at 9. I had a beautiful room as far has hospital rooms go. Private, large bathroom, bed couch, dresser, two easy chairs. Not to mention the best view in the city. Mountains, ocean, city scape.. gorgeous.

My hydration and chemo went fine. I sat most of the day in my room in the sunshine doing my stitching. Loukia and Ivory came for a little visit in the afternoon, which was greatly appreciated  and the day passed peacefully and with out incident. 

Around about 6:30, instantly I got such a weary on. I had to lay down for a bit. I couldn't get my eyes closed fast enough. I though this a little odd, but chemo can make me tired, so I just went with it.

By 8:00, I was in full fever mode. Terrible chills. It felt like my bones where made of ice.  The nurse came in and took my temp and all hell broke loose! I had nurses taking my temperature, iv girls drawing blood out of one arm, a nurse putting another iv drip in the other. Taking urine samples, and worst of all, making me have ice packs on my forehead and shoulders! Just what a freezing cold girl wants, NOT.. but they wouldn't give me a warm blanket until my body cooled off some, so I went with the flow.

The checking and poking and prodding went on until about 2 am when my temp was finally down low enough that they would give me a warm blanket and let me sleep for 3 hours, before the next round of blood work, drugs and of all things taking my weight at 5 am! not to mention the ups and downs using the washroom as usual, every hour.

The doctor was very concerned, apparently he is the type that needs and answer to everything. So when the cause of the fever was not the usual suspects, he didn't want me to go home on Thursday as planned, so I was in for the long haul.

Other than the food being the most disgusting thing on earth, and even with all the chaos around me, I managed to get through the day. Looking a bit haggard but I did get through it. 

[debbie067-blog]

Note from Pony:

Deb wants to let you know she is OK. She had a fever last night so they are not letting her out of the hospital til they find out why. So far all the tests have come back great, so it may be just a little glitch. They are keeping a very close eye on her and she hopes to be out B4 noon tomorrow... Not to worry, all good.