Sling and more....

Zoe went to Guides Christmas party in the morning, Birthday party/KRock hockey game in the afternoon. I spent 8:30-4:30 at KGH Hospital. Had an awful attack of not breathing and severe pain last night. . We nearly called 911 but it subsided...waited to see if anything was going to happen but I fell asleep and woke up this morning. Dropped Zoe off and headed to ER. They did an x-ray on my chest and left arm. I had several issues. My wrist has tendinitis and my shoulder has bones that have calcified and severe bursitis. I over worked my shoulder by cross stitching too much for long periods of time. I am now in a sling and been given some narcotic medication to help with the pain, it's that bad, Haven't stitched in 4 weeks, this happened after I stitched "I shall wear purple"  I cannot stitch until my shoulder is better :( I have to go back to KGH for a VQ scan to see if I have new blood clots in my lungs which may have caused the chest attack which will not be good news.. Wednesday I have surgery for a new port and pammi  treatment.  I need a break!


This is what my sling looks like, but this is not me

Miracle Smiles!

Nothing like smiling so much my face hurt. Why you ask? This is why....

Nurse Sarah: Oh Hi Velda, our miracle patient is back! How are you, you look great! (We continue and finish up with what she needs to do)

Intern Dr P.M. Hi my name is "P" Nurse Sarah told me I just had to come in and meet you, everyone here says they are amazed by you. (blah, blah continue my check up etc)

Dr. O. (one of my all time fave docs/radiologist) Big smile on his face and says "Ah my miracle patient, you look fantastic" Says all my reports are great, nothing new, see you in 3 months....

I'm glad I'm doing well, but it just blows my mind and makes me smile the biggest smile when my hospital staff says such nice things -- I get the same remarks from my oncologists Dr. T and Dr. L and my fabulous nurse Charity and my dozen phlebotomists. They all make me feel so good :)

Surgery

Well it's been a very trying few days. I was supposed to have my port removed Oct 28th. Peter and I arrived at the hospital on time and reported to registration. Half an hour later we were finally called in to OPPU to be prepped for surgery. Prep involves a gown up top and an IV needle struggle with several nurses trying.to get it in my arm in case it's needed. So by now we are at 3hrs. Porter takes me to the IVR room where the surgery will be performed. I wait and wait, another hour goes by. Doc M comes to me and asks me when my next pammi is? (In my head I'm thinking, oh no, not again) I tell him, "The following day". He says to me well we don't want your port taken out because we can't put a new one in on the same day. So he sends me home Grrrrrr he's really messing with me. Back to OPPU to have my useless needle removed from my arm. The next day I have to come back to him to have my gripper put in then go up to Chemo to have my pamidronate inserted. Sound familiar?  Finally back to the hospital on Oct 29, meet with doc M again, he attaches my gripper, go to Chemo to have my pammi. Now usually I can go home at this point, but because of the surgery I have to wait around for the pammi to infuse which takes 2-2 1/2 hrs, BOOORRRRIIING!!! Then I go back to chemo, have them remove the pammi, then back ti IVR to have the gripper removed and then on to surgery.

Finally I am on the gurney. There are no surgery rooms available so they decide to do it in the "curtained room" right beside another patient and a room full of nurses. Nurse gets everything ready, I see the scalpel and various other surgical apparatus then a "tent" is put over the surgical area and it blocks my face. Darn I wanted to watch lol. So off we go, he needs to keep adding more and more freezing as the pain continues. He tells me everything as he goes along. 'I am cutting, I am having the nurse put pressure on the large vein while I remove the tubing.' Then he is about to remove the port. Hmm interesting, he says it's crooked!!!!! I've been telling him this for 3 months!! He also says to me "I don't know why everything hurts so much most people don't hurt like this" Well geesh doc, maybe because my port has fallen over and dislocated from where it should be!!.....So here is the grossest part if you don't wish to read the details, Doc snips off the stitches inside that was holding the port, he says the port has fallen sideways and down. He tells me I'm going to feel some pressure. He tells me he is sticking his finger along the port and because it's fallen down into a cavity in my chest, he needs to stick his finger down and under the port to pull it out. I had a few choice words going on in my head as he did that part. It took about 20 minutes to clean everything up and start the stitching. 50 minutes for the procedure to be complete. I am taken back to OPPU to recover for 1/2 hr. My surgery area burned all evening and night.


This morning it's not burning but it's very painful. Extra strength tylenol is my friend. I go back to the hospital to have a new port inserted on the opposite side (left) on November 26th. Yeah me.

Thank you for all the love and support.

Yay!!

I know it may seem odd for me to be WOOOOOOHOOOOing over my upcoming surgery, but my wonderful Oncologist Dr. T has convinced IVR to replace my Port!!!! The nurses, phlebotomists and myself are going to be VERY happy!! Bring on Oct 27th!!

GRRR!!

OUCH!!! 2 wonderful nurses each tried to access my port, both failed. My pammi is now stuck in my hand. :( SO angry at the IVR doc for not wanting to fix it. Another report being made by the nurse today for IVR to look at my port again. I think my nurses might revolt if IVR doc denies a replacement again (would be the 3rd time!)

In medicine, a port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein.

picture is not me but this is how it should look, you can't even see mine anymore and the bump is gone and it feels like it's tipped sideways.

This is what the wonderful nurse had to do instead.

5th Anniversary

Since my diagnosis.

Good news!!!

On the eve of the 5 year anniversary of my cancer diagnosis, I got the BEST news from my oncologist!! Dr. T gave me the results of my Kingston CT scan --- my lung tumors are shrinking and I haven't been on chemo for over 10 months!!! The next piece of fabulous news is the result from my Ottawa MRI on my brain. My brain tumor has shrunk from 3mm to 2 mm!!!!!!!!!!! WOOOHOOO!!! Everything is on a fantastic path. Both my nurse Charity and my Dr. T are flabbergasted that I am doing so well. Peter took me to the appointment today and he took me out for dinner at Amadeus (German restaurant) and a beautiful white bouquet of flowers. I always consider white signifying cancer.  What a great day!! Peter is making fettuccine for dinner too :)

3 appointments in 3 1/2 hrs

Was driven to the hospital by "Larry" a volunteer driver. What a lovely man, we ended up talking a lot about genealogy.

First appointment was at IVR to have the gripper put into my port. He didn't have any problems so he feels nothing will be done after all. No surgery/exchange of port. I feel bad for the nurses who struggle with it. 

Second Appointment was 2 parts. I had to drink a huge bottle of fluids prior to the CT scan, took me an hour and a half. It tastes horrible. I am allergic to the injectable fluid (anaphylactic) so I have to drink the crappy fluid instead.

Third appointment was going to chemo to have my Pamidronate attached to the gripper. I told the nurses the doc decided not to put a new one in. They shook their heads and are not happy. Next step will be to talk to my oncologist and see if she can convince him to change it.

\Back to the 2nd appointment, I had to go to imaging to have a CT scan of my belly. Not sure exactly what they are looking for, I'll wait until my next oncologist appointment to find out. . 

Next appointment is  on Monday Sept 8th back to Ottawa for an MRI. Peter is coming with me. 

The rest of the month is quiet. The kids Zoe, Zac and Ashlee) all went back to school.My 49th birthday is Monday September 15th, Zoe's 11th birthday is Wednesday September 17th.  She starts her second year of Girl Guides Tuesday September 9th. And last but not least another appointment with my oncologist Wednesday Sept 24th.

I am sure my calendar will have more things added as days go by.....

Surgery

I will have surgery and a new port put in. Unfortunately it won't be soon. Since the nurses are struggling putting the needle in and I have to have it done next Wednesday, the doctor at IVR wants me to come down the morning of my appointment for the pammi and HE will insert the needle. I'm kind of glad he will get first chance to see what a pain it is. Then sometime in the next 3 weeks I will go back in and have my port replaced.

Moon Face

What is Moon Face you ask?? When some people are on steroids, they swell up. A common reaction is swelling of the face and neck. Well lucky me got it hard. My entire face and neck have been swollen since May. I wasn't going to show it but I figured since I've shown everything else, I might as well add this. I'm embarrassed by it but there is nothing I can do about it. I am slowly reducing the steroids but it will take a long time for my face to shrink back to it's normal size :(.

Here we go again...

I am still giving myself Fragmin - blood thinners- via needle twice a day. In the last couple weeks my tummy was looking really good, so much so that nearly every bruise was either faded or gone. My skin was looking white again. Well that didn't last long. About 4 days ago one bruise was about 5 inches wide. I just ignored it until I woke up one morning and saw a reflection in the mirror and it was HUGE. Then it became sore and bigger and bigger. It then started to raise up and became red. I was concerned that it was becoming full of blood like the last one that needed to be aspirated (blood sucked out). I decided to go to the local clinic to see what doc had to say. In the end he asked me if I thought I should go to the hospital emergency. I said yes and he agreed. So off Peter, Zoe and I went. Grabbed some supper on the way down, knowing we'd likely be in the ER for awhile....Had some rough handling from the female doctor *ouch* and they decided they would not do anything. I was told to wrap my tummy with compression bandage and put ice on it and take pain killers. So I have both extra strength tylenol, morphine and although I hate ice on me, I am going to put cold/wet facecloths in a sandwich bag in the freezer and use those. Rather than a tensor bandage Peter suggested a "girdle" I had from over 20 years ago and it STILL FIT!!!!! It really smooshes my swollen bruise flat and keeps it from sagging which causes a lot of pain. Hopefully I can just take it easy today and rest up.

Here are some lovely NOT photos.

Bruising

My bruising seems to be finally getting better. There was definitely more black than skin tone a few weeks ago. Still sore and bumpy under the skin but absolutely better. Thought I would do a comparison This is the mostly  black ones. and here is what they are like today. My tummy straight on looks huge, it's chubby but it just has my shorts pushing the tummy out making it look like a balloon


                                                                     Left side

Center

Right side

Also not sure I ever posted my foot and leg. I bruise so easily. My left foot was hit 3 times in 2 days, It was completely black 3 weeks ago, Now getting better. 

My left foot I rammed into Ashlee's heavy bin,  it bruised my 2 large toes and the main part of the foot. Jet black. My middle toe is fine. I then dropped my ironing board on my 2 small toes making my foot and toes more black. 

Next I ran into my dining room table completing the bruising on the entire foot. It's taking a long time to heel. HAHA get it HEEL!  (heal  even tho it's the toes and foot)

My right leg is also bruised no idea why

Professional

These came from my radiologist, very cool photos!!

Cool Entry

The radiologists allowed Peter to take as many photos during this procedure. Very neat photos. The even took some Medical photos for me from their machines and asked for my email address and emailed them to me. I wonder how many people get that option!! AND she became a friend on facebook!!. Over the last 2 days I have had 3 radiologists : Sarh, Julie and Beverly. They were fabulous. VERY professional but also caring, sweet, smiling and so very kind.

So this is how the procedure works. You will see in photos what I am talking about. The room is massive. It's very different from CT scans and MRIs because NOTHING touches me. I lay on the bed, my head lays on a hard service. The radiologists  snaps on my specially made mask that is completely stuck on my face, I cannot budge. Then the procedure begins. Things whizz, shake, buzz, turn in the air, at one point this big round thing comes close to my head but does not touch me, it looks like an alien!! It's just the coolest thing I've ever seen. There are photos taken from the ceiling and so much more. Here are the photos of my hour in outer space lol.

What a fabulous day!!

I didn't sleep much today, about 3 hrs only but that's okay. I decided to get out of bed at 4:30 am and cross stitch. I do have to complain about the beds, they are like bricks SO hard and uncomfortable but I suppose a bed is better than none.

I started cross stitching and got quite a bit done, I was very happy. Peter finally woke up later in the morning and we decided we would go and get some breakfast as soon as the cafe was open. I had eggs, sausages, bacon, toast and potatoes. Delicious. Peter had about the same. 

Back to the room and hung out until we had to go to my appointment. Nice bathroom and huge locking storage cabinets.

  

So what's really great about this Maurice J. Grimes Lodge is it's complimentary, has all kinds of reading rooms, tv rooms, pool table, puzzle rooms, DVD/VCR room, several TV rooms and a huge kitchen with lots of refrigerators and microwaves to cook anything you want to bring. So far, Peter and I just go out to eat lol.  There is a shuttle that takes us back and forth to the hospital for my appointment in the morning so we don't have to pay astronomical costs for every time you park. Still have to pay $13 a couple times if we leave off the hospital but that's okay. 

View out out lodge

  

Entrance to the Ottawa Hospital Regional Cancer Clinic. This hospital is stunning. It is so clean, beautiful, the staff is incredibly helpful There are so many volunteers, all you have to do is ask for help and they will walk you to the very exact place you need to be. Talkative, smiling. The staff, reception, nurses, radiologists AND the doctors will take all the time you need for them to answer every single question you have. I felt very special and felt as if they wanted to be sure you had every detail answered. 

I will end this entry and make a new entry for the Medical portion.

Oops

After my blog post I showed Ashlee my tummy and when I lifted my shirt I was bleeding like crazy.
With my blood so thin, it was POURING down my belly. Called cancer clinic they told me to get to ER.
Considering, I got in pretty quick. Apparently they think my last injection I hit a blood vein and boy did it bleed! I'm going to have to be more careful.  I'm okay now.

!!!!!!!!!! WARNING GRAPHIC PHOTOS !!!!!!!!!

Several months ago my oncologist had told me about another oral chemo pill specifically for my lung cancer. This would have been a medicine from heaven. I started the pill and took it for about a month. During my regular check ups, x-rays, CT scans etc, it was discovered that suddenly my lungs were filled with blood clots. We still are unsure whether the new Xalkori  oral chemo began causing these clots. Bad news is blood clots are not good. It's imperative that they be kept under control. It took about 2 months and various amounts for the doc to feel that I was being given the right amount to keep it on a stable stream. I suppose it's a good thing needles don't bother me, they showed me how to inject myself and it began. I was taken off the Xalkori. Currently I do not take any chemo meds for my lungs. My blood thinner is called Fragmin.

I have to admit that I am so tired doing injections. I have to take 2 injections a day of 10 000 UI shots each. One problem I have is I also have an old hernia on my left side and I'm not allowed to inject there. Hernia is a tennis ball size so it removes a large area I could have been using. I can't do my legs it's too excruciating. Sometimes it's really hard to find another tiny spot. Each time I inject, it leaves a small bump under the skin and a bruise on top.

The very large black one you see is because sometimes the bruises just all amalgamate together and look horrible. Under the skin in that spot, all the little bumps have also rolled together and is now a big bump the size of a thick triscuit cracker. It will take so much time for these bumps to shrink and the skin to go back to normal colour.

I always said I would show ya'll the real thing. To me this is gross and disgusting. Not only my fat, saggy, belly ( thanks 3 c-sections in my early days and unable to lose weight) but it's what I deal with on a daily basis

Hopefully it doesn't gross you out too much.



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WARNING

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Relay for Life at my daughter's school

Relay for Life: Today the school hosted the relay. We arrived and listened to a speaker from the Cancer Society who talked about various things they provide. She teased us not telling us what the school raised financially just yet. The people who were invited were those who were fighting cancer and their families. One young student, and if there were students who had family members with cancer those were the invited guests. For example. Zoe being a student with me, her mom with cancer, another student with her grandma with cancer. I believe there were 9 people invited along with their families. The students and family went outside to make a circle, all the Cancer participants went out and walked in a circle in the middle and all the people clapped and cheered for us, it was heartful. We then went back in and went into the Luminaria room where our family had decorated bags in our honour with glowing candles. They were so beautiful in the dark. Then we had munchies! It was a very special afternoon. Thank you Zoe  Ana Grace. for being with your mom during this time <3 <3 <3 Oh yeah!! Raised nearly $5000!!!!!!

Maurice Grimes Lodge

While Peter and I have to stay in Ottawa for 3 days, the hospital is providing us with a free lodge to stay in. It seems nice. It has a room for us. In the building  they have a fridge, microwaves, freezer, tables to eat at or in our bedroom (Or go to RESTAURANTS!! lol) etc. The lodge is right near the hospital in case of emergency. There are ladies there 24 hrs a day at the front desk. We only have to bring our own clothes, towels and food and toiletries. Everything else is provided at no charge.

It's called Maurice Grimes Lodge.

Final set of appointments

I have my brain mapping Tuesday June 10th.

Ottawa Hospital called. They have my 3 intense appointments planned for me. I will have to stay Monday June 23, Tuesday June 24, and Wednesday June 25th. I hope it will all work out and I can come right away. We will stay at one of 2 lodges while there. My nurse is Nurse Pascal and the doctor is Dr. Malone. I've met him, he is very nice, friendly and I really feel comfortable with him. My procedures will take place at radiation North Ottawa Hospital.

Please keep me in your thoughts and prayers during this time. Still a little scared.

Next Ottawa Appointment

My masking Gamma Knife brain tumor appointment is on June 10th at Ottawa General Hospital. It will take about 1 hour. Thankfully I can go there at 9:30 am  and and come home for the kids from school., Sadly this is on my beautiful daughter Ashlee's birthday :( <3 Hopefully everything will work out just fine.

Ottawa General Hospital

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  6:08am

  
  

  
  

  Dear family and friends

  
  

  Unfortunately I have some cancer news to share with you. First off this is messing up with my speech so I am having troubles coming up with words and vocabulary that I normally have so I am apologizing in advance. Last Wednesday I need to start with a different story to bring you to what has happened. At 4:30 AM last Wednesday morning, my cat attacked my face. He pushed his fang into my face which went into my eye and his other fang went very tiny into my cheek. It was bleeding very badly, ended up at the ER. To make a long story short, I had to have it frozen, opened, cleaned, eye drops and amoxicylin. I don't know why my cat did that. He is my baby and I love him so much. I know no longer sleep with him at night and sleep with my bedroom door closed. Please do not judge my cat, he is my baby.

  
  

  I lead with that story for a reason. My short story in ER ended up being 14 hours and so much more. For some reason the nurse/doctor decided that my speech seemed funny at the ER that morning. I didn't notice. The visit led to blood work, a CT scan of my brain. It turns out I have a 3cm turmor in my brain that is sitting on the left side of my speech. I have not had chemo therapy for awhile as I have been working on blood thinners. Because of this, there is a chance that one of these blood clots has also gone to my brain. Sadly nothing can be done in Kingston. Last Wednesday was my first trip to Ottawa General Hospital Cancer Clinic. What a beautiful state of the art hospital WOW!!! They were VERY good to me and Peter. I was explained every thing. I ended up immediately with blood work, a CT scan and I was masked with the personalized head mask I will need for my MRI. I am claustrophobic so this part is really scaring me. It was this heated fabric thin mesh that was really warm and it was put around my face, locked onto my head and I had to lay there for 5 minutes for it to harden to my exact shape. Then we came home. This coming week we have to go back again. Probably Wednesday again. 2.5 hrs there, an hour or 2 at the procedure and 2.5 hrs back again. It's exhausting. This week they will be masking the tumor in my brain to have it ready for the major procedure. I am not looking forward laying there completely still for that long but I know it's necessary.

  Then comes the big procedure. We will be going to Ottawa again for 3 days IF everything goes okay. The bleeding is the worry says doc. They are performing a Gamma Knife Stereotactic procedure, altho it has nothing to do with a knife. It is VERY precise. The doc has to do it for a period of time for 3 days in a row and then hopefully over several months the tumor will shrink. I just hope that my speech doesn't totally collapse. I have already been missing and forgetting my vocabulary and it's way to frustrating for me who never shuts up lol. If you continue to read my blog, this is where my updates will be since this is private.

  Thank you always for all your love and support.

  
  

Terrified

This morning when I got up, I felt completely normal. I went to the bathroom, washed my hands and then went to get Zac up for school. I started talking to him and nothing came out right. I was terrified. I didn't mumble I just said random words after words after words. They didn't make any sense, I just woke random words. Then I started crying I was so scared, didn't know what was going on. Zac took me in his arms and tried to get me to stop crying. I finally settled down but words didn't make any sense. He woke Zoe up as my words were still all mixed up, She was way too tired and I let her go back to sleep. When she woke up she was able to go go school. Zac sent her off as I went back to sleep. When I woke up a few hours later, my speech was back to normal but very very slow. not slurring, clear, but slow. Took me time to think clearly what I was saying. I had to make a few phone calls. I am so good with phone calls but nothing would come to me as usual. I had to look them up instead. I was supposed to have an MRI Saturday but totally forgot. I have another one booked for this coming Saturday. This has been the most scariest situation I have ever been through. I hope it was because I've had a few busy days and I was just way over tired. I slept and although my speech is a little more straightened out, I still have to think slowly before I speech. So this coming Saturday I have an MRI and then the following Monday I have a bone scan. What a totally scary day today :(

Ya put the right leg in, ya take the right leg out

(This is not my foot)


Yup my right leg is a mess. If you haven't heard the story from the beginning, I will fill you in. February 14th at Disney World I tripped on some carpet and smashed up my knee. It swelled like a cantaloupe and bruised from my groin to my ankle. A few days later, back in Canada, we went straight to ER. They x-rayed and did not find any broken bones or injured ligaments/tendons. I was put in a Zimmer splint and given crutches. I hobbled home in pain. Over time it began to get better and I was able to put a little weight on it. I was able to remove the splint and just use crutches. One night going to the bathroom, my crutch slid on shower water that wasn't cleaned up. I fell backwards into the bathtub with my legs hanging out. I was bruised across the top of my shoulder blades and across my entire hip/tailbone area. My ankle was injured more. Few days later I headed for bed. I attempted to turn off the lamp and turn to go to bed. My foot stayed still but my body turned, same leg.My ankle swelled like a tennis ball and I couldn't put any pressure on it. Back to ER, no breaks or injured tendons/ligaments, back on crutches. It is so sore, oxy and morphine are not even touching the pain. It wakes me up at night, it brings tears to my eyes and I'm miserable. I went out to a lovely brunch with my mom in law and sister in law. The next day my Achilles heel and tendon are in agonizing pain. My doc today sent me down for major x-rays of my spine, both hips, ankles, femur, feet and anything else related to those bones. I have an in depth bone scan planned for next week.

We discussed my cancer. My CT scan showed the prime cancerous tumor has grown a little and I have a few new small ones. Nothing to be concerned with for now. I have an MRI booked for next week to check out my head and torso, it's been 2 years since they did an MRI of my head. My breathing/lungs sounded good. My reflexes were good and she (my doc)said that other than my injured leg I'm in pretty good shape.

So no new meds, no worries about the cancer at the moment, just trying to relieve the pain of my right leg.

Doc just called, I have an avusion fracture in my ankle. The tendon has torn away a piece of bone. Waiting to see if it's going to be casted or air boot.

Decisions

Today I decided to take my health into my own hands. I'm tired of living at Hotel Dieu Hospital and Kingston General Hospital. In the last 2 weeks I was at more appointments than I was at home. I'm sick and tired of it. I'm not talking about my cancer appointments, I know those are mandatory. I'm talking about my eye injection. I didn't know I had an eye problem until I went to get new glasses. So I've had 5 appointments total, 3 of them injections into my eye. I can see letters on the screen now. They still want me to come back for more injections. I've chosen not to.

The other appointments were in regards to the injury to my knee/leg at Disney in February. I FINALLY got in for an ultrasound, 6 weeks post accident. The ultrasound showed no damage that the doc could see. He could send me for an MRI if I wanted. I declined  I can walk on it and the residual pain is managed by my Oxycontin and morphine.

So I signed up with volunteer drivers of KGH to take me to my oncology appointments since my husband just started his new job today building solar panels. Yay!!!

Well my friends and family, the snow is slowly melting, the temperatures are beginning to stay above 0C for the most part and hopefully the sun and green grass, flowers and singing birds will be within our grasp soon.

“How fair is a garden amid the trials and passions of existence.” ~Benjamin Disraeli