Monday, 23 December 2013

Update



It's been awhile. My eye treatments are going well. I have 2 more to go, one in January and one in February. We will see ( lol no pun intended) what happens after that.

Tomorrow I go for another treatment of pammidronate. I also got news today that I am going back on my oral chemo. I am very glad. Seems strange doesn't it, happy to go back on chemo? For me it's like racing in a car without a seatbelt around a dangerous curve. WITH the chemo in my system I feel a little more secure.

I am still on vesicare, valproic acid and fragmin. I HATE the fragmin. It burns going in, gives me huge bruises and in some spots creates these bumps under my skin. They hurt. Hubby bought me a heating pad and that does help quite a bit.

Not sure if I mentioned my angel friend in my blog and what she did for our family recently. She graciously paid for a 10 day trip to DisneyWorld for all 6 of us. Hubby, 4 kids and myself. All expenses!! She is amazing :)  Just 46 more days!!! AND I'm going to meet HOLLY after 10+ years of knowing her online!!






Well Christmas is nearly upon us. I hope anyone who celebrates is reading this, I wish you a very merry christmas!!! And a happy new year!

~~Velda



Sunday, 17 November 2013

More?

If it's not one thing, it's another. I went to the mall yesterday very excited to get new glasses. Turns out that I was not able to see ANYTHING out of my left eye. The letter chart was completely white. He tried many different lenses and nothing. It scared me, I had no idea I had eye issues. So turns out I have  a macular hematoma in my left eye. Doc says it's urgent. I will be seeing an eye specialist VERY soon, hope to hear from them early next week. If I should happen to have any issues with my sight I'm to go directly to emerg. Just another thing to worry about *sigh*.

Wednesday, 13 November 2013

??well??

Not sure what to say. I went in hoping to have results about my clots. I got nothing. Really there isn't anything to tell me. I am not going back on chemo for now. We don't know if the new chemo pill is the cause of my clots, but it doesn't matter, I have clots. So I live with clots and I live with 2 needles of Fragmin a day. I will see doc again in 2 months unless something happens in between. I HATE having the clots, I feel like it's a time bomb sitting inside of me. What a drag.

I also got some bad news last week that a lifelong family friend was diagnosed with lung cancer, I love this man like a father, it breaks my heart. I need to make a trip to Ottawa soon.

And to top it off, my dad has become more ill. There is a chance he may have MDS - a blood disease that could end up being leukemia. We are awaiting the test results. It's been a very long 2 weeks.


Friday, 18 October 2013

Long road...

It's been a very long and painful 6 days. My sad day a few days ago turned for the worse. It began with the visit to the hospital and discovering I had 2 clots in my lungs. These clots were not reported to my oncologist or family doctor for 21 days. So I was put on blood thinners (Fragmin) to try and dissolve or at least shrink the clots, one in each lung. So this is a bit of a repeat. Come Saturday, I woke up unable to breath. I finally caught my breath and tried to go back to sleep. Wasn't working. Ended up in ER. My pain was to the point of me screaming on top of my lungs. I was crying, nothing was helping. I eventually got 3 doses of morphine over a period of time, still no relief. Went for a CT scan and docs came to tell me I now had 4 clots, 2 in each lung. I was finally given a strong dose of dilaudid which helped with the pain. The fragmin wasn't helping dissolve the clots. I was told I would be admitted. And so began 6 days of needles, medication, scans, terrible food, being awake all night. I am now home, still working with the doctors at KGH to get my meds straightened out. I am not in very good spirits, really worried something else will go wrong. Thanks everyone who supported me in so many ways.


Thursday, 3 October 2013

Sad

Having a down day after yesterday's news. Waiting for my nurse to come to "teach" me how to stab myself each day. Hurray, NOT! :(

Wednesday, 2 October 2013

Thud...

That's me hitting the floor, figuratively, not literally. I felt great going to today's appointment. I've been feeling very tired but well. Today I had the usual blood work done, Pamidronate inserted into my port and headed to Dr. T's office. I waited for my appointment, saw my nurse Charity, my nurse friend Lori and generally chatted to people. It was my turn so Peter and I headed into the room. My exam proceeded, we talked, and she asked me about my recent visit to emergency. I told her what had happened and that I was now fine and assumed everything was okay since I was never told otherwise. She went to check the report. She was gone awhile. When she returned I could tell something was wrong. I was told that I had blood clots, 1 in each lung and I never should have been sent home. On top of that, even though I was sent home, either emerg or my family doctor should have called me to tell me to get myself back to the hospital immediately. So I have two blood clots that I've been walking around with for 22days. NOT HAPPY!!!! Very angry that the proper procedures were not taken to inform either my oncologist or ME!! So I had my first injection at the hospital today. Tomorrow a nurse will come in and go more in depth about the medication including how/where to inject it. Then, if I feel comfortable, I will do my daily injections myself each day. *Sigh* figured when everything was going so well, something had to rear it's ugly head. My new medication is called Fragmin. Another day in the life of cancer.

Wednesday, 25 September 2013

7hrs and 4 years ago......



......my life changed forever. Beging with a numbness up my arm and continuing with numbness running down each of my fingers on my left hand, one at a time, I knew something was seriously wrong. I thought for sure I was having a stroke. Little did I know, reaching the hospital in my husbands van, being taken to the back emergency area, because a lot of SARS was going around then, my day would take a turn for the worst. They asked me to climb up on to the gurney, my words came out all garbled and everything went black. 3 days later I woke to someone yelling my name and telling me to wake up. It was a Doctor named Shibley. She said "You have lung cancer, time to wake up" What the hell??? I was shocked, not about the cancer but about the way this so-called doctor spoke to me. I never saw her again throughout my entire treatment, but to this day I remember her face. What a bitch!!

Anyway, doctors and nurses were in and out, people came to visit,friends and family. I got to know the other 3 ladies in my room. I was the youngest. 4 years later I am still friends with Nancy and Jane. Ironically Nancy lives just up the street from my in-laws, I often drop in to see her. Jane is a bit further away but I keep in touch. The little old lady who loved her bacon was so sweet, sadly I can't remember her name. Peter brought in some bacon for her one day (with permission from her doctor) and it was like he gave her a million bucks she was so happy lol.

My first treatment was radiation to my brain. No big deal,until my hair fell out and my skin fell off. Reactions to medications followed. Two trips by ambulance for anaphylactic shock to meds and a few trips to ER to sort things out. Weekly chemo visits where I became friends with the wonderful nurses like Donna, Shelley, Traci, Spiroulla and Marianne. They eventually learned my morbid sense of humour when it came to this dreadful disease. I often had them in stitches (no pun intended). Sadly after going to the chemo room, much of the staff has changed and the new girls don't know me as well since I take oral chemo at home now. I am only there once a month for about 20 minutes instead of 4hrs at a time. Then there is my doctors, Dr. Anna Tomiak and Dr. Cindy Lollar, the best doctors in the world. They listen, they suggest, they care. They are also surprised I'm still alive. My nurse Charity is a hoot. She always has something to say to make me laugh! Then there is Lori. She is a family friend who was able to get me into the cancer clinic quickly and with Dr T&L. I will never be able to thank her enough.

My appointments have been a lot of work. In the beginning they were so often it felt like all I was doing was hospital and sleeping and popping pills (17 a day at one point). Things started to slow down. I always had company though, my husband accompanied me most of the time, my mother in law, my sister (in laws) Julie and Teri, my brother (in law) Steve, and a few friends here and there. I don't know what I would have done without them, thank you. Currently I go for one appointment a month. 1 is a short one just to have my pamidronate put in the IV port, then my nurse Chris comes to the apartment to remove it for me. The following month is my long appointment, usually about 4 hours. Bloodwork, x-ray, doc appointment and pamidronate. Then I wait at home for 2-3 hrs for the Pammi to run it's course and Chris comes over to remove it. An all day event.

How am I feeling you ask? I feel relatively good. My only real complaint is that I am tired and cold all the time. My hair is about 1/2 an inch long, sticking straight up, very fuzzy, but soft. I notice it's growing quickly now. I am taking 3 pills for seizures, 1 for bladder issues and the new chemo pill twice a day that is pinpointing my exact cancer gene for the lung cancer I have. My skin is dry and flaky in places, I use Aveeno, the only cream I've found that doesn't make me break out. I bruise easily, you should see my arms and legs after we moved! I look like a giant grape/plum. Yes, we moved again, from a 2 bedroom to a brand new 3 bedroom, completely renovated, it's GORGEOUS!!! We are still in the same building but down to the second floor from the 4th. Other than that, as I sit here today on my fourth anniversary, I think I'm catching a cold. I just had a bowl of nice warm oatmeal hoping it helps warm me up a little. Mau, my cat, is curled up beside me, at least the left side of me is warm, lol,

Well my dear readers, who knew I would be writing this note to thank all of you for all your love, support, encouragement and prayers. I couldn't be more blessed to have ALL of you in my life.

Tuesday, 10 September 2013

Just Breathe

This morning my sister-in-law Teri took me to KGH where I had a V/Q lung scan I had to put a plug on my nose and take a huge breathe in, hold it and release. Some special machine did readings on the capacity of my lungs. Then I was in the CT machine and the technician scanned my lungs, After that I was injected with special dye and scanned again. This was to find out if I have any abnormalities such as blockages in my veins/arteries. I will have results in 2-3 days. My chest is very sore today. I am taking it easy today. Thank you for all the words and stories on the post below, it means a lot to me to have all this support.

Don't take breathing for granted...

You breathe in and breathe out and repeat the process. But what happens when you have wicked chest pain, can barely catch your breath and start feeling dizzy? You go to the hospital. Peter took me down to KGH yesterday. I was having incredible chest pain and it was interfering with my breathing which then made me a little dizzy. I had an ECG done immediately to rule out a heart attack, They sprayed nitro under my tongue to slow the chest pain down, took blood work and put an IV in my arm. We arrived at about 6pm and we were home by 10:30. I have to go back today for another test to rule out pulmonary embolism. I got a shot of warfarin before I left and now await the call for the appointment. NEVER take breathing for granted, you never know when you will stop breathing in an instant. Trust me, it's VERY scary.

Wednesday, 4 September 2013

All is right with MY world!!!

My oncology appointment was superb! I have no issues with ANYTHING!!! I feel fabulous, look fabulous and I'm doing fabulous. And you know what started my day off right? I fit into my jeans I haven't worn in many many years!!! I never thought I'd wear these again!

Oh and did I mention my other new news??? We are moving into a BRAND NEW 3 bedroom apartment in the next few weeks.EVERYTHING is new, floors, walls, tiles.....it's big and roomy. OMGosh you have no idea how over the moon I am with this move!! Same building we live in currently but on a different floor. I am beyond excited!!

Thursday, 8 August 2013

I am a mutant! AND Dem bones, dem bones, dem sore bones....

It's been confirmed that I have the mutation - ALK-positive (Anaplastic Lymphoma Kinase) in my cancer tumors to be approved for the new oral chemo drug called Xalkori. The reason I am so excited about this, is that this particular oral chemo drug is SPECIFICALLY for the cancer I have NSCLC (non small cell lung carcinoma) with metastasis. Doc L told me that there is a huge reduction in the size and amount of tumors while on this drug. Anywhere from 40-70%, Now before you start jumping up and down, I am still terminal and always will be. This drug however could give me more time :). I hope to be on it in the next week or two, I just pray I don't have an adverse reaction to it. So, that's where I am with the new drug.

I had a Cat scan last Thursday evening. Basically some tumors have shrunk and some have grown. I'm beginning to understand that this will likely be the way things go right now. I will try not to stress too much. The best news is that the primary tumor that began this whole thing has shrunk :) I'm anemic so I need to look after that as best that I can (not a fan of liver like I used to be) Will look for other options in addition to spinach.Mild sclerosis was found on my T8 vertebrae in my spine. I have some sclerosis near my ileum (intestine). I also have several small bone islands (overgrowth of bone mass on a bone) Guess my bone strengthening meds are working! However, the scan also showed more cancer metastasis on various bones.

How am I feeling? I'm tired, all the time. I'm losing a bit of weight again but I chalk that up to the fact I'm back on the Tarceva (oral meds) again. My left eye is itchy, hoping it's not blepharitis flaring up again. My spine, hips and knee are always sore. Not being able to take anti-inflammatories really sucks. Other than that I'm good. Fuzzy hair is still growing, I can walk (stumble/limp) short distances. With help (usually from Zoe) I can do dishes, laundry and make the bed. Between Peter and I we do the garbage and recycling and share the cooking (he makes a mean fettucini!) So all in all I really can't (and rarely do) complain, there are others who are much worse off.

Thanks again for all the love and support, it truly makes me stronger!

Tuesday, 23 July 2013

WooHoo!!! My GENES fit!!!!

No, not those kind of jeans, my GENES!!! I am a candidate for the new oral chemotherapy drug. Brand name Xalkori, Generic name: Crizotinib. Now for the loads of paperwork to approve it through insurance and get started on the drug!! I am pleased and relieved to have another oral chemo drug. I was dreading going back for 4hr chemo room visits. Not because of the staff, they are fabulous, it's just boring as hell.

Saturday, 29 June 2013

My Final Resting Place

I will be cremated and interred at St. Mary's Cemetery. This is the columbarium. This is a photo of the entire structure and then a closeup of my 'spot'. I am on the right (facing the photo) 3 squares up from the bottom (you can see the reflection of my friend :) ). I removed personal information from the stone above mine. My space overlooks the baby burial ground. For those who know me well, that's fitting, don't you think?


Tuesday, 18 June 2013

Breathe in, and hold.....while I stab you with a long needle

Here is a very recent photo of me, my peach fuzz is so soft :)
I had forgotten to tell you something from my last appointment. Although I am being given a lower dose of tarceva now in hope that I don't have eye flare ups again and other issues that might be a result of the med, my oncologist, Dr.T, has given me another option. There is a recent new oral chemo that I may be able to change over to. But nothing is ever as easy as that. You may remember long ag that I was tested for a gene that would have allowed me to take the first oral chemo drug available. I was not a match. I had to go through treatment with IV chemo instead. This is the same thing, my tumors must have a specific gene in order to allow me to take it. Why the possible change? Well, my tumors are growing slightly and the tarceva may be wearing out it's usefulness. The first gene testing was done with the original lung biopsy sample done way back in 2009. That biopsy was originally done to determine whether my cancer was benign or malignant, but there was enough to test for the gene as well for the first chemo drug. Now I have to have a new biopsy done so they can take a new sample and test it to see if I am a candidate for this new oral chemo. I don't know the name of it, she may have told me, but I've forgotten. This procedure will take place on Thursday. The first biopsy scared the bejeepers out of me, it feels like your lung collapses and for a few split seconds I feel like I can't breathe. If you are claustophobic like I am, you will understand the scariness. Hopefully it will go off without a hitch. This how they will do mine, through the ribs, through my back, I will be face down.

Thursday, 13 June 2013

Words.

As you know, I have had many, many appointments in the last few weeks. Yesterday was the day I learned the results of those tests.  I was examined by a resident, new to my team. He was a nice gentleman, a little rough to my frail bones but I let him know when it hurt, he said sorry a lot. Everything was fine through the exam. As you may remember I was taken off my oral chemo, tarceva for several reasons, specifically trying to get to the root of several issues I was having. The conclusion of that experiment was that the blepharitis in my eyes was a direct result of the oral chemo. It has  completely cleared up, I am ecstatic about that. No more feeling of sand encrusted eyes. We don't know whether the medication I was put on for my bladder issues cleared up because of that or because of the removal of the oral chemo meds from my system, but that's gone too. My bowel issues have also cleared up.  So you'd think I'd be overjoyed, right? Not so much. The results from my testing came back. The dreaded word I hated to hear.  It is the ONE word I never want to hear: "Growing".  :(  My oncologist tried to convince me that they were only minute growths, "Only a millimeter or two, it's so small."  I don't care if it grew a foot, it GREW! 5 of my tumors are growing.  The more it grows the closer I am to death. Let's face it people, the damn disease is not going to go away. I also have diverticulosis
which was found during my cystoscopy. So, I'm in a downer mood right now. My oral chemo is going to a lower dose so I can go back on it and hopefully my eyes won't flare up again. I also got my appetite back. Blah!! I gained 4 pounds because I'm always hungry now, hopefully the chemo will kick in quick so my weight can get back into the area I was headed before, DOWN!!. My port is really bothering me, it's painful and uncomfortable and nothing can be done. Well that's all I have for you friends and family.



Speaking of "Words", a friend posted this on facebook and it suits me. I'd like to share it with all of you.


~♥ After a while you learn the subtle difference
between holding a hand and chaining a soul
and you learn that love doesn't mean leaning
and company doesn't always mean security.

And you begin to learn that kisses aren't contracts
and presents aren't promises
and you begin to accept
your defeats
with your head up
and your eyes ahead
with the grace of woman,
not the grief of a child

And you learn to build
all your roads on today
because tomorrow's ground
is too uncertain for plans
and futures have a way
of falling down in mid-flight.

After a while you learn
that even sunshine burns
if you get too much
so you plant your own garden
and decorate your own soul
instead of waiting for someone
to bring you flowers.

And you learn
that you really can endure
you really are strong
you really do have worth
and you learn
and you learn
with every goodbye, you learn..



 The Social Butterfly 
https://www.facebook.com/TheSocialButterflyCommunity




                                                                     

Wednesday, 22 May 2013

Fill 'er up!

Yesterday I went for aCystoscopy. I was nervous, mostly because I have had those big catheters in use before, with 3 out of my 4 children and I H.A.T.E. them. I find it uncomfortable and painful. And true to form it was. After my original screech, I calmed down with the help of 2 nurses, the procedure began. A camera was attached to the catheter and I was able to watch (and feel) as it entered my bladder. It was a "live" picture. I tried to find something online that resembled what I saw but couldn't find anything. The inside of my bladder did NOT show any cancer or unusual lumps or bumps, thank God, in fact Dr. B said it was a perfect bladder *grin*. He filled it and I promptly emptied it, but into a cup attached to the gurney, not all over the bed like the last appointment. The inside of my bladder was a beautiful soft pink colour and it had ripples all over like those of the brain, only a little looser, not so firmly packed. It was quite a wonder to see that. So doc said that my bladder filled and emptied fine, but then he wasn't able to fill it again. He said that he had never seen this issue before in his career. He then said I was an enigma in the medical field. I swear if I had a dollar for every time a doctor said that to me, I'd be rich! He prescribed Vesicare. Perhaps I have an over active bladder. I hope this helps.


A brain for reference:


Wednesday, 15 May 2013

Here and there and everywhere...

Hello fellow readers :) Man was it a looonnnggggg day today!. The day began with me getting the kids up early, they got ready for school. We all headed out, dropped the kids off to school, haha, we only live about 50 steps away, but it was a special treat. Our plan was to get to the hospital early so that I could have my pamidronate early, then x-ray, blood work and doc. Turned out I didn't have a doc appt until next month (oops) or x-ray, but still had to get my bone strengthening pamidronate anyway. We got in pretty quick. Blood work and pammi done. My fabulous nurse Shelley asked me how I was and I told her pretty good except for my usual aches and pains, but my eyes were really driving me crazy. She promptly went on the search for my cancer nurse Charity. She arranged for me to see Dr.T after all. Bit of a wait but not too bad considering the waiting room was completely full. I have now been referred to an opthamologist. YEAH!! Another appt. *sigh* Oh well, maybe this will finally get me the answer I need to clear it up. I also have a very sore rib due to an 'incident' (private matter) that happened 3 weeks ago. She pushed on the area and I nearly stuck to the ceiling it hurt so bad. So off to x-ray I went. I LOVE that so many young people are training in the medical field, but when someone comes in to see if there is a possible broken rib, please DO NOT grab them by the ribs to situate them where they need to be. Ouch. . Doc is taking me off my chemo for awhile. I've been having skin problems and along with the eye problems, we are going to see if the chemo is the culprit. Makes me a little nervous, but I guess I just have to trust her judgement. Off to lunch, Jack Astor's where my nephew TJ is a chef. He came to our table, we haven't been to this one in Kingston yet so weren't sure what to order. He suggested some sweet and sour chicken Thai dish with snow peas, carrots, bean sprouts and my first time tasting jasmine rice D.E.L.I.C.O.U.S. and first time using chopsticks, I think I did pretty good. Peter had this 6 inch tall burger with pulled pork, tons of cheese and other stuff. But I digress; back to medicine. Went to CCRC to have my pammi removed then finally home for an hour, then back out again. I have the cleanest teeth in town! Gosh I love that feeling :) Now I am home for the night. I bet I will sleep well tonight :) More appointments next Tuesday and Wednesday. Wonder how much they would charge me to just rent a room ;)

Tuesday, 14 May 2013

Worry? Who, me?

I was born a worrier. I worry about good things, I worry about bad things, and everything in between.  I've been worried about an upcoming procedure that was cancelled twice. Today I finally went in to have my Urodynamic testing done. I wasn't familiar with the procedure and am always a little scared of the unknown. The technician was lovely. Very professional, yet kind. She explained every step prior to proceeding. She showed me all the medical items being inserted. I was glad to see how small they were. I was to show up with a full bladder for 12:30pm. I sat waiting until 1pm. Do you know how hard it is to sit with a full bladder when you have bladder control issues???? The first thing I had to do was pee so she could measure the capacity of my bladder. Then I had a very tiny catheter inserted in my rectum and another in my bladder (ouch!!) She began filling my bladder via an attached saline solution to the catheter in my bladder. I had to tell her when I felt it filling, when I first felt the need to "go" and then when I needed to "GO!!!!!!!!" Well that took all of about 3 minutes and all over the bed it went. How embarrassing. She told me that that is what normally happens and it was ok. My entire process took 15 minutes. It was recorded on a screen like the one below that measured pressure inside and outside my bladder. I will have the results next Tuesday when I go for my second testing called a cystoscopy. Tomorrow I have my blood work, x-ray, pamidronate and oncologist appointment. In other news, I am currently a pirate. My Blepharitis is really flaring up and I need to wear an eye patch until another visit to the hospital tomorrow. May head to the eye clinic at HDH instead of KGH. That's all for now. Another update tomorrow.

Wednesday, 24 April 2013

Hello everyone!

I have a few updates, I've been very busy. I've been dealing with Zoe's newly-diagnosed migraines, Zachary got the flu, I missed an appointment, another was cancelled and my husband has issues with his Cpap machine. Things never seem to slow down. I guess I'm getting used to my port but I still dislike it. It's still tender.I've had 2 needles in it so far and DAMN did they hurt. I would have been happier sticking with the IVs but the nurses were really struggling with finding my veins. Each month after my pamidronate, I have to go to CanCare for them to remove the IV from my port. I have to laugh, they dress up head to toe in gown, hat, gloves, booties and one of those masks with a plastic shield in case something spurts toward their face. I guess whatever is going into my body is pretty toxic. Funny, they don't dress like that at the chemo room at KGH. I had my monthly pamidronate infusion for April and my routine Dr appointment. My best friend Denise came with me. Today I went for a bone scan. My osteoporosis and rheumatoid arthritis along with my degenerating discs and tumors on my spine, need to be monitored closely. Again won't know results until next appointment. I asked the tech for a printout of one of the scans. He directed me to medical records. I just wanted random photos/x-rays/scans/MRIs etc and they gave me a disc with 1000s of images and it's ONLY from 2011!!!! lol. It's very cool, it comes with a special built in viewer and with each click I can go through slices of my brain. There are other images of all my organs, body parts, fat!!! ewwwww, glad I've lost so much weight. I tell you, If you don't think you're overweight, get a full body x-ray, it will show you your bones and then all the chub around it YUCK! It truly shocked me. Glad I don't look like that now. Oh and since I reported I was under 200lbs, I'm now 193!!! I still want to lose more tho. Here are a few chosen images I'd like to share. I am not a medical technician/doctor so I can't answer many questions about them, but I thought they were cool.

I've been told many times I have no brain!

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PHEW!!! There it is :)

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Air-Supply ♪♫♪♫


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Just Breathe...


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This is an ultrasound of some part of me. I thought it was cool that I consist of fire and water *giggle*


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Thank you for all the continuing love, support and prayers.



Thursday, 21 March 2013

Happy Spring!


Spring? Apparently spring has forgotten us, as I peer out my window, all I see is white. And cold. And wind. Brrrrr.

My update today is regarding my last 2 doctor appointments. First is my port, it's looking much better, but still very tender. I like to sleep on my side and it's uncomfortable. My large breasts pull on it, and it gets sore. I need to wear a bra to bed. I H.A.T.E bras. Secondly, my kitty loves to lay on my chest at night. I have to be very careful when he starts to climb on me, he has bony paws. And thirdly, although we have a king sized bed, my husband seems to think he gets 3/4 of it. Can't tell you how much it hurts to get an elbow in the chest :(. I now sleep with pillows between us. Here is a picture of it all cleaned up.



Then on Wednesday I had to have my pamidronate connected to my port for the first time, I was pretty nervous. Turned out my scheduled nurse (new one) was on break, so I got Donna, a seasoned nurse who I've known from the very beginning. I felt a little more calm, but still anxious. She walked me through each step before proceeding and all went well. Little painful prick, but nothing more than that. Then home. Sat around, waiting for the meds to flow into my body, then off to CanCare to have the pamidronate disconnected. I used to do it myself at home but now, with the port, I can't. There are special cleaning procedures that need to be done and warfarin medicine to be injected to be sure nothing gets plugged up between my port and my neck vein tubing. Aphoto of my pamidronate running.


---------------

Thursday:

Today I went to see the rheumotologist. I waited a year for this appointment. I've had pain in my right knee since I was 12. Nothing was ever done about it, but it's getting worse. Today they found fluid in my knee and bursitis. Story of my knee's life, always the same thing. Nothing heals it. My back/pelvis/spine is another issue. I have tumors on my spine and that along with degenerating discs, rheumatoid arthritis and osteoporosis (which is why I use Pamidronate) my back is not in good shape. I've tried everything. Dr. T. T (not to be confused with my oncologist Dr. A. T) suggested I try acupuncture, yeah, more needles. lol. My daughter's friend's mother is a licensed acupuncturist, so I may give her a call.

Why is it when you go to the hospital, you come out in more pain than you went in??? lol

My best friend (since grade 7) took me today, as she had an appointment today too. She had some pretty nasty major surgery on her knee and was there for a follow-up. We laugh so hard when we are together and today was no exception. I love her so much.

That's all for now. My next update will either be when something goes wrong or sometime in April. BTW, I'm going to see a huge concert on March 25. VIP Tickets, backstage pass, meet and greet, photo op, gift bag of goodies, sound check/acoustic show, reserved seating and then the big show. Who's playing you ask? I'm a country girl through and through (Really I like everything except rap) I will be seeing Emerson Drive, Doc Walker and one of my faves Aaron Pritchett. Can't wait!!!!

Sunday, 3 March 2013

Port of call (graphic photo)

I got a call from CanCare to come in Sunday to have my port area cleaned and looked at to be sure everything looked okay. Bandage came off, had it cleaned up with alcohol. Port area went great but when the neck incision was cleaned with alcohol, I just about jumped out of my skin. The nurse quickly ran across the room to grab sterilized water and washed it off, whew, ouch! But all is good, still have steri-strips on in both places which will dry up and fall off in several days. One of the nurses in today at CanCare was one that used to come to the house when I had home care last year. She was happy to see me still around. I will have to go into the office to have my pamidronate disconnected and my port cleaned once a month. Darn, that means no more taking out my IV myself anymore. I had fun doing that, as strange as that may sound. Here is a photo after the clean up. Still sore and tender, as is my other arm. Not allowed to lift anything or do much for the next 5-6 days. Gosh golly darn whatever will I do???

Friday, 1 March 2013

Surgery went well --WARNING GRAPHIC PHOTO--

My surgery to put my port in today went smoothly. NO issues at all. The nurse also took a look at my arm from last week. She spoke to the doc who was doing my port surgery and since she could see I was in pain still, she asked about giving me a shot of morphine 'right now' while I waited. I'd be getting morphine anhyway during the procedure. Shot went in and within just 5 minutes I couldn't feel the pain in my arm. Sadly it will wear off soon and the pain will be back.

Surgery went well. Nothing much to say about it. I was nervous and scared for nothing. The doc and nurses were fabulous. I am falling asleep at the keyboard, so I will leave it at that and update more later.
Thank you very much for your support.

Tuesday, 26 February 2013

Update to my update of my original post

So back from the hospital. Stopped in at Pam's to say hello, it was really quiet in there today. Then off to the hospital. Saw my oncologist first, it's NOT cellucitis,it's merely the fluid that went into my skin instead of my veins that isn't reabsorbing fast enough. Nothing they can do but manage the pain. Morphine !! Guess I'll sleep well tonight, for a change. As for the urologist, Doc took my pee asked me a ton of questions and set me up for a cystoscopy in April, yeah.It will indicate any abnormalities or problems with my bladder and surrounding organs. That's all for now!

One purpose, one needle, 3 hospital visits

So, it's back to the hospital I go today. I was already going for a late in the day urologist appointment, but now I'm going sooner for an impromptu secondary appointment. Remember my red, swollen, hot arm, a result from a screwed up IV? It's still red, swollen and hot. I called my fabulous nurse, Charity, this morning and her response was "Come on down" - but this is no game show. I can't even lift a glass :( It really hurts bad, she thought perhaps I have cellulitis. I will let you know how this visit goes.
As I mentioned, I will be visiting a urologist today as well. I'm tired and ashamed as a grown woman to be wearing diapers. I know it's all part of the process sometimes, but it sucks. If I finally get this cleared up, I'm going shopping at a girlie store. I think I can actually buy some cute stuff to wear after all the weight I lost ;)
The usual fatigue is setting in again, we've had a lot going on. My grown son is/has moved into his new apartment across the street from us :) Both little children have brought home great report cards!! I must admit somewhat shocking in some respects, but very pleased. My husband has a good job that just upped all their medical/dental/vision coverage, which quite honestly was incredible coverage already. They continue to allow him to take off all days for my appointments with pay. Knorr Brakes Ltd is an awesome company. If you happen to own a train in Brazil or China, and it needs new brakes, give them a call. *giggle*

Thursday, 21 February 2013

It's a long, long road....

The day started fine, knowing it was going to be a routinely long day with having both my pamidronate, blood work and my doctor appointment. Let me preface this by saying: they are never on time and nothing ever goes as planned. Blood work goes great, first shot in the arm, boom, done! Then the wait begins. Appointment is for 11:00am. It's 11:00 am. Continue to wait. A thought suddenly pops in my head. I wonder if the receptionist ordered my pamidronate from chemo, wouldn't be the first she's forgotten, which can result in an hour long wait. Sure enough, she forgot and ordered it while I stood there. Dare I mention she was the same one who lost my papers about an issue last year that I had to have redone and redelivered. Anyway, Get the holler for my name and head to the scales. To my surprise and delight even the hospital scales had me below 200! It was usually about 5 lbs off or so. That made me happy. So far, so good. Charity, my beloved nurse comes in, takes my vitals, filled out the form regarding nausea, vomiting, fever, headaches etc. A few check marks but nothing that hasn't happened before or that we are awaiting other specialists to take a look at things. Bladder, bowels, bones, spine etc. I'm examined by Doc, nothing out of the ordinary. Then comes the "vein talk". My veins aren't doing what they are supposed to do. They roll, hide, shrink, burst, everything except allow the IV/needle to get it. It's been decided, much to my chagrin, to have a port inserted into my chest to allow greater ease with IVs and needles. Here is my white port that will be surgically placed under my skin next Friday. The woman is not me, shows how the port will look when it is healed. An X-ray showing the port. And how the port works. I'm scared for next Friday, I hoped it wouldn't come to this, but I can't keep putting these poor nurses through trying to find those stupid little veins, this will be so much easier for them. (Source: Photo of woman) So we head home, stop for a little lunch, my arm is sore as we are driving, but I figure it's because they now use these big huge IVs/needles when on me, they usually use the paediatric IV. So we eat, but it continues to get more and more sore. The IV is draining fine, so, again, I figure it's just the new needle size. Sitting at home, I notice my arm slowly swelling around the insertion site. Now I'm freaked. Show it to my husband, he says to call the hospital, they say come down right away, and we do. Apparently the 'nose' of the IV got bent and started filling my arm under the skin instead of the medication going into my vein. Damn veins, damn big IV. They take it out and send me home. So now, at nearly 4pm the next day I await the clinic to call me back because it still looks like I have a breast implant under my arm and it hurts like hell. I'll keep you posted. Until next time!! Thank you for the prayers, love and support.

Wednesday, 6 February 2013

YAHOO!!!!

 
 
 
I am finally under 200lbs again. Eating healthy and lack of appetite, that's about it. When I was first diagnosed I weighed a (grotesque in my eyes, for me) 246lbs......I had never been that big...but now I am under 200lbs for the first time in many many years. The last time I was this low was when Tammy and I joined Weight Watchers (it worked, just never stuck with it). I am so happy....Here are my ugly feet with a beautiful number between them :)
 
 
 


Saturday, 19 January 2013

Picture test...

Testing a photo upload - old photo of me with my glorious hair :)

Saturday, 12 January 2013

Blepharitis

HEAD FOR THE HILLS, I HAVE Blepharitis. lol I need to soak my eyes with a warm cloth (which I had been doing) and then wash my eyelash pores with a Q-tip and water/J&J Baby shampoo 4X aday. Thank goodness it's such an easy process. I can't wait for them to heal. They are as red as tomatos and burning. This is so painful! http://en.wikipedia.org/wiki/Blepharitis

Here are my eyes 3 after 3 days of cleaning. As it is an easy process, it sure is painful. My eyes don't look as red in the photo as they do in real life, but you can certainly see the swelling. Today my right eye is very painful,yesterday it was my left. (pic is above - just learning the new upload/picasa process, bear with me :) )


I hope this clears up soon. Still unsure whether this is a result of my oral chemo drug Terceva.

Happy New Year everyone!