Copy Right

I want to CLARIFY this. IT saddens me to do so. BUT after much thought and consideration this blogs ENTIRE contents will now be copy-written. WHAT that means is that as much as i like Pinterest, I cannot allow any of these photos to become property of them. and that is what happens when someone pins my things to pinterest.

Let me now explain why i have come to this decision. I post pictures of my family on here so that my family that is far from us can see what is going on in our lives and participate in the day to day things. when i realized that pinterest can SELL my photos once they are posted to their site, i go to thinking about some of the cute photos of Matt....

then i thought of Gerber....

then i thought Yea but whats the chance....

did i want to simply give over that picture? No i dont....

So at this time i am disabling pinning. it was either that OR stop blogging.... Now certainly people can still STEAL my photographs, but that is what it would be stealing. and stealing i could prosecute if i chose too.

I have yet to decide if i want to do the same on my craft blog.... I need to think on that some more...

Long term illnesses

Most people with a long term illness loose many of their friends during the time of the illness. People just cannot cope or deal with the specific needs that people go through when they have a long term illness (LTI), or with the fact that when you come out on the other side the disease has changed you so dramatically, you simply are not who you once were. It is sad to see those friends go, but it is also a great Joy to have new friends come into your life that "get" LTI and what a LTI does to you.

Tonight there is a benefit for my very good/best friend that i have met (reconnected with) since my illness. We went to HS together, I cant say we were close but we could chat. She has sarcoidosis.

Sarcoidosis is a disease that is not well known. When I first got sick with my Hodgkin disease, they had this disease in the mix of what i could possibly have. I have thanked God that i do not have this disease. because through her, I now know what it does and how terrible this can potentially be.

the Mayo clinic defines this disease as....

Sarcoidosis (sahr-koi-DO-sis) is characterized by the development and growth of tiny clumps of inflammatory cells in different areas of your body — most commonly the lungs, lymph nodes, eyes and skin.

Doctors believe sarcoidosis results from an abnormal immune response — most likely to something inhaled from the air — but just what triggers this response isn't known. The course of sarcoidosis is variable from person to person. Often, it goes away on its own, but in some people signs and symptoms of sarcoidosis may last a lifetime....

She tries not to complain about it, and i think shes a real trooper. they are treating her with a second course of steroids. she will be treated for a minimum of one more year (7/2011). then they will try to wean her off of the steroids and hopefully she will receive a remission. The picture above was taken just prior to her illness. She has been in treatment for 2 1/2 years.

So Today's Post is for my friend who I am so grateful to have in my life. I hope that anyone local can come out to her benefit at our local moose.

My Space

This is my space. I do everything here. My PC is here for my blogging, my Nail Polish Kits are on the floor on the right hand side. Beside the garbage can is a small piece of wood, that i set up on a TV tray if I am going to do Michelle's nails for her, or if i am doing an arts and craft thing. I also pay my bills here, run my Mary Kay business, you name it, I do it here.

I try very hard to keep it neat and organized, because of how much goes on, but it is forever cluttered.

The word I have recently heard to describe our home is "cozy" I think that was a VERY polite way of saying "Tiny" But i love the close proximity of everyone in my family. Mostly when i am in my space, Steve is within an arms reach either playing video games or watching TV.

I like that about our home. He and I spend enough time apart from each other, while he works. When he's here I wish to be with him.

So that is the area Susie I do have to say, I do envy your area, or maybe its just your polish collection!

Informed Eating

In one of the blogs I follow, I read where a new Philadelphia law that requires restaurants with over 15 locations to post calorie content on their menus took effect.

The particular author was, well lets just say not pleased about it. Personally I think its a fantastic idea! If you are trying to loose weight and you know how much you are putting in. Even if you aren't trying to loose but you know that you don't want to ingest more than 1800 calories in a day. You can't very well eat whatever you want can you?

Lets take a walk through a typical day of a newly informed eater. They are going to be AWARE of what they eat.

You eat a bowl of ready made oatmeal for breakfast. The packet style OK? its 160 calories right? That's good that's healthy. You stop off at Starbucks and you pick up a Mocha Frappuccino® Blended Coffee (my personal favorite) a gastly 380 calories so lets leave off the whipped cream! After all you are INFORMED well that's so much better at 260 calories. What are we up to now? 420 cals and you aren't even at work yet.

Well that's still not to bad right? You still have 1,380 cals to spend! So you walk into work with a smile on your face a healthy breakfast and you are feeling pretty proud of yourself sticking to your new diet and new lifestyle of an informed eater.

You packed a can of Chicken and Stars soup for your lunch only 70 calories! OH wait that's for 1/2 a can and you ate the whole thing. 140 cals. Still not bad you now have 1240 to use for dinner. hummmm Dinner?

OH its Friday night isn't that pizza night? Well you packed your lunch ate a healthy breakfast, and left off that whipped cream (good thing you had that on the menu...)

OK so we are going to go to pizza hut and we will get a healthy pizza.
Pizza I love this stuff. I could eat it every night of the week. TODAY is the FIRST TIME I have ever seen the cals of a pizza. I can really polish off the pizza, maybe 4 slices....

I don't like pan (its too greasy) so lets go with MED hand tossed, Steve loves the Supreme (260/slice) I was thinking plain to cut some calories (220/slice) but veggie lovers comes in at 200/slice! so lets eat 4 slices of veggie lovers that is 800 calories to go with your netflix.... HUMMM what does that leave us with? 160 cals left. that's GOOD! lets pop some popcorn! microwave popcorn regular butter 160 cals/ serving but they don't say how many serving in a bag, its 2tbs unpopped corn... how do we figure this out? you can only eat maybe a 1/2 cup? maybe a whole cup?

This day came in at 1520 cals. 300 cals lower than I anticipated (actually i thought it was gonna go out of the park!)

How bad could it have been? well without making a hog of yourself...

1. Oatmeal 160
   
2. Mocha Frappuccino® with whipped cream 380
3. chicken and stars 140
   
4. Glazed donut at work 200
5. Med DD coffee when you got done with work cream and sugar 90
6. That supreme pizza? 4 slices 1,040
7. popcorn movie theater butter 170 cals only 10 more per serving not bad that grand total is 2180! 680 over
   

If that medium pizza was a pan? 2300 ~ 800 calories over and PLEASE don't ask how much more if you ate 5 slices or I might cry! thats information I just don't want to know....

What have I learned?

well I think the converter I used to tell me how many calories I consume in a day to maintain my weight is wrong. So I started looking for some. And indeed I found one here.... It isn't a direct science but it gives you a place to start.

I also learned if I am ever get to the bottom of this weight issue, I need a food journal every day every bite. somewhere I can write it down and make myself accountable for it. Honestly I think i do alright with what my calories but lets see shall we? I found a website that helps with it but I haven't looked it over yet. I'll do that soon. like tonight!

I also learned I LIKE the idea of having that information right there on the menu! look at the calories I saved by being INFORMED! OH and just for giggles check out the calories on that menu! That is a BREAKFAST menu. can you imagine being 1490 calories in at BREAKFAST?!?!?! YEP we need this in our menus!!!

Radiation Update...

Well I saw Doc N yesterday

He told me that all looks well asked if I had any complaints and I told him i had a bad itch on my back, he looked at my back and agreed it looked a bit dry, he gave me some ointment that I can put on it in the evenings but not in the morning before treatment.

It helped a lot with the itch. A HUGE thank you to Michelle for being kind enough to put it on for me, she also just rubbed that spot very gently while the ointment was on it. That was wonderful as well.

I am very tired and I had attributed that to just the drives down and back every day not to mention the fact that I have to get up early to do all the chores I would normally space out throughout my day to getting them done in the morning before I go to treatment when I get home I simply do not have the energy to do anything. Get some supper and perhaps watch some TV but chores are OUT!

In general though I feel SO MUCH BETTER than I did with Chemo. after all I am just tired now not sick and tired ! HAHAHA ok I thought that was funny sorry dry humor...

Not much time for blogging Must motor along! I am however getting lots of crafting done! The two hours in the car is making for great crochet time check out whats going on there!

crafts

What my radiation therapy will be like

This is a photo of a radiation machine like the one that will be used on me. They lay me on the board and the machine moves around the table depending on where they are radiating. thats why it is at an angle.

To me it looks like a gigantic water faucet. If you can imagine that it will help me explain a few things....

Where the water would come out (provided of course it were a faucet...) is where the radiation will come out. There are lead plates that are lined up like slices of bread inside that part of the machine. The computer program has a diagram of the shape that needs to be radiated. this was done by overlaying my first and my most recent cat scans. The plates slide backwards to take that shape. The plates looks something like this when they are in position. I did this on paint so its not accurate, just close to what I remember.Michelle and I think it looks something like New Jersey. LOL the north part of the "map" would be where the tumor was at my collarbone whereas the south part would be behind my sternum.

This will keep the radiation pinpointed to just the area where the tumors were. I will have to lay on the table for 15 mins after they get me positioned. I have 4 tattooed "points of reference" I would say they are about this ( . ) big. They look like tiny black freckles. There are Lasers that make a + across my chest. my 4 tattoo dots have to be positioned at the four ends of the +. That is how they know the above diagram will coincide with where my tumors were. AIN'T THAT COOL??

New Doc

This is my new Radio Oncologist. David B. Nagel , MD
He is wonderful. He took the time not only to explain my options, but to make certain that they ARE options. and if I didnt like what he had to say that I should feel free to check with another doctor. I just love that in a doctor too me, it shows confidence and knowledge.

I had lots of concerns when I went in, mostly about how radiation exposure can CAUSE cancer. That's why you get a lead apron when you get x-rays of your teeth. Enough concerns that I didnt even want to have radiation done. yea, I was really freaked out.

But I never got a chance to ask him any questions, the first thing he told me was how radiation has changed since the world went digital. They will use my cat scan that shows my tumor (or rather where it was) and "merge" it with one since the chemo was finished this will show just where they need to focus the radiation too. and it will work up some computer program. (I think) so I dont have to be all inked up... but I am guessing on that... that would be cool not to have ink all over the place.

The next thing he told me was how with Hodgkins they have found that lower doses of radiation to follow up chemo works just as good as the higher doses they used to use. The higher doses used to cause fatalities by Breast cancer & Lung cancer. so yes a decrease in hodgkins deaths but an increase in other forms of cancer that were actually CAUSED by the treatment... but now with the lower doses, and the more accurate aiming, the bad stuff from radiation is OH so much not as bad. Best of all I wont get sick to my stomach, and it wont touch my hair!

so my two biggest concerns... he took care of before I had a chance to think.

:)

anyhow so only three weeks M-F of radiation. This will increase my chance of non recurrence by 25%. made the odds sound OH so much better and its just another month. whats one more month? The hardest part will be going every day for three weeks.

PET Scan

Yesterday I had a PET scan (Positron Emission Tomography) Out of all of the scans I have had this one bothers me hardly at all, the worst part is what is after the scan is over... but we will get to that.

PET scans can be used for lots of things. We are checking to see if my cancer is gone.

What else they can be used to diagnose brain disorders such as Alzheimer's, Epilepsy, Parkinson's disease and other things.

If you would like more information on PET scans this is a nice site

What happens...
the day before... you cant do any exercise, no snow shoveling, no Wii, no treadmill, no gym. a pulled muscle would read as a false positive.

you also have to fast this is to bring your blood sugar down, your BS cannot be too high, or they cant do the test... because the radioactive stuff is in a glucose solution and the cancer cells use the sugar faster than the regular cells so they "glow" from the radioactivity.

Every time you have one there's paperwork... so you need to get there about 20 mins early. then they take you off in a room all by yourself and start and IV line, they test your blood sugar, then they inject you with a radioactive isotope. and hand you a glass of barium to drink. My facility uses blueberry, I have also had raspberry. How much you drink depends on how thick it is. It all depends how much they water it down. Count on it not tasting good either way by the last mouthful you are wondering if you will hold it down.

Then you wait. It seems like forever but its only 45 mins. Then they take you back to the machine.

Where i have mine done the velcro your feet and tummy so you don't move on accident. I actually like this it makes me feel more secure about not falling off the board. and the scan a little bit of you every 5 mins. the last thing they scanned on me was my head area, which is good since i am a touch claustrophobic. byt the time i get my face in the tube i have "talked myself" into how its almost over and i am gonna gbe out in like one song. the radio plays where i get mine done. the music helps.

then you are all done.

Now i told you the worst comes after... well here you go. no small kids no pregnant women, no old people. because you are still radioactive for 24 hours after your scan. I will be untill noon today. you have to flush toilets twice, and speaking of toilets, all that barium you drank? well if you have a slow moving system, do something to speed it up. personally myself i get something greasy to eat after (McDonald's or something) because McDonald's always moves right through me. thus the barium comes out easily. I failed to do this after my first CT scan and well lets just say i would rather do it this way....

I have noticed that my white count dropped after my last PET, so for good measure im going back to my own version of No Raw today just to be on the safe side. that means its a loose version... i stay away from salad bars hospitals, high germ areas and high germ foods. but i will still eat bananas and other peel able fruit. this is my own concoction, not recommended by my doctor. just something i do for me so i wont worry. if my drs office calls me and tells me to go "no raw" that's a whole different diet

A look back at my Treatment

Yesterday was my "proposed" last treatment barring no problems with my next scans to determine that I am cancer free.

Today I thought I would share a bit of what My chemo has been all about.

This is me all hooked up waiting for my last treatment.....
I have already taken two tylenol to fight off the possibility of fever and a 50 mg Benadryl to counteract any alergic reaction.

This is my "pre-treatment" its is a combination of steroids (accountable for the 40lb I have gained since I have started treatment... well that and the cake) it also has an anti nausea med in it... sometimes that worked sometimes it did not. so I always bring my compazine with me just in case.

The bag on the left is saline used to flush the tubes and my port of one med before we start the next, when i started out prior to my port we used the BIG bag of saline because the DTIC (Dacarbazine) was very caustic to my teeny tiny veins.

These are My three "Pushes" they are called pushes because they are given as an IV injection over a certain period of time I am uncertain of the times even though I have seen it done 12 times now and they tell me every time I keep forgetting which ones are what times one is like ten mins and one is like five. These are given in a certain order and over the certain times because it is related to cell process and order. Some medical thing about how the cells divide.

I will name them for you from left to right.
Velban (Vinblastine)
Adriamycin (Doxorubicin) I know I have this first and its red like Koolaide
Blenoxane (bleomyacin) this med will give me a horrible sunburn if i go out in the sunshine for more than 15 mins at a time.


DTIC (Dacarbazine) is the three hour drip, I dont have a picture of that, it is light sensitive so its encased in a black bag to keep it from the light....

If you would like to find out more about them i have provided a link that its really easy to read up on them.
This is my Chemo nurse Barb ... She has been doing this for ten years and in those ten years she has only seen one Hodgkin's patient return for more chemo. I made her a macreme plant hanger as a thank you for being such a great nurse for me.


The chemo lab is set up in a half moon overlooking a beautiful garden with fountains and landscaping. this spring this was beautiful, the only problem with that is its beautiful; and you are stuck sitting inside looking at it instead of experiencing it. But still better than looking at hospital walls.

This is the bell of finished treatment
Because my treatment was so long no one was there to see me ring it except
Barb and Steve

Deep venous thrombosis

DVT means in simple terms A blood clot in one of the deep veins in your limbs. These normally occur in a leg, typically your calf muscle.

Mine is in my arm, about mid way down the inside of my arm above my elbow.

This has caused: swelling in my hand, forearm, continuing up toward my neck, discomfort and lastly pain.

The way we are treating it: Daily injections of the drug Lovenox into my belly, for a month or longer. Very small needle. hardly any site pain barely knew I had the shot. But lets make something clear.... I have plenty of area in which to receive this shot. LOL! This in no way is anything like a tetanus shot or even a flu shot. Those I HATE!!! you have site pain soreness the difference? Those go into the muscle. These go into tissue (ok lets call a spade a spade FAT) I have a teeny tiny mark from it about the size of a bee sting providing you aren’t allergic. This is nothing in comparison to the needle sticks I have gotten so far with chemo.

What makes this happen: I have been given several reasons why I could have developed this. Chemo can cause it (OH JOY) as well as can a port (JOY JOY) since I have both... yea guess I am in a risk factor group. That’s ok.

What I need to watch out for: Since I am in a "risk group" now I need to watch for Pain or swelling in my calves, shortness of breath, pain my chest, pain when I breathe.

Do you want more information? I went to the "The National Alliance for Thrombosis and Thrombophilia (NATT)"

its a great site with HUGE amounts of information. as well as online support and message boards and all kind os hints and tips as to how to prevent this from happening. The amount of people that have this occuring is STAGGERING. Go and look for yourself to learn if you are already in a risk factor group. For example, did your Granny have a stroke and you are on the pill? That two risk factors, throw in a 4 hour car ride and now you have three.

its almost scary. I am starting to see whey they weren't surprised by this.

You can get there HERE

What TO say to a cancer patient

Yesterday I posted a "don't do this post". Well I thought I should balance it with a "do this instead" post

When I was first diagnosed there were many people I felt I needed to tell. co workers etc.

Things that were said to me that were good to hear.

"I am sorry" this conveys the sadness that you feel to me. This also tells me that you care about my health and my well being. I dont think I ever felt this as pity. If you genuinely are sorry about this news certainly tell me so.


"Can I hug you?" Asking is good, I may not feel really well or I might be bodily sore. This gives me the opportunity to tell you "not too tight" or to ask "are you sick?" or mainly if I just don't feel like it I can say "I don't feel well today but thank you for asking" I think I have turned down maybe one hug in the 6 months I have been ill.

"I am so stunned I don't know what to say" This was one of the best things that was ever said to me. It was pure and honest. and I thanked him for it and told him it was OK to feel this way. Because we were still stunned then too.

Honesty is something you see easier. I don't know how but you do. sincerity means alot. if you are it will mean alot.

when you see someone again after you know about the illness if you wish to inquire about the cancer, do so. a simple "how are you doing?" will normally bring "cancer" right up. if you get a "pat" answer of "I'm fine" dont press they just might not want to talk about it. you can follow this up with a nice "I am thinking of you" or "I am praying for you" this allows a thank you and lets get on with the day.

what else i have found to be nice? CARDS! cheapo dollarstore 50cent cards. I have one girl that send one every two weeks or so I love still getting cards. even if it says no more than "Hey your on my mind" its wonderful.

Cards later on are nice too. you get a real influx of cards when you are first diagnosed then they dry up and you feel like everyone has forgotten you so a card after a while means so much.

email ... I addressed forwards yesterday. how about you dont have the time/money to go out and get a card. open a new message doesnt have to have stationary or a funny e-card just a blank letter and write in it "Hey i am thinking of you hope you are well" and sign it and send it. you wont believe how that will make someone feel! you might get a simple "thank you for the letter" or you might get a full fledged letter saying how things are you never know. but a short to the point letter to open up a person to talk to might just be what the person needs. someone to talk to with no germ transference (yes we think about germs alot)

Another thing you can do is Offer to listen. We get many "if you need anything" comments. Who do we call? easy the ones that include their phone numbers. I have kept all of the cards I have received. the ones with phone numbers especially. I have called many of them. It has been nice knowing who i can and who i just cannot call.

There have been those people that have put forth the offer "you just call if you need anything" but they cannot follow though. if you cant put forth the time dont offer. its as easy as that. simply say you will pray or what ever like that. if you can do it offer. don't offer if you can't.

i think you are starting to get the idea now be sincere, be honest and be kind that will do a great job at what to say and how to say it.

What NOT to say to a cancer patient

Recently I had a very insensitive comment made to me. I do not think that it was intentional. But really the words came out of her mouth, and she said it directly to me so I guess she meant to say it.

This has given rise to this blog post. I know that many people have the best of intentions while doing these things I am about to list. but let me tell you right now they dont help, they can even emotionally hurt the person you are trying to support. it can also lead to frustration by the patient because they are getting bombarded by this from many diffrent directions with no polite way of saying to the "support" person:

"that was THE most insensitive thing that has ever been said to me"


So if you would like to know what not to say/ do READ ON!

Please do not say...

"it wasn't the cancer that killed my father it was the Chemo"
This is the phrase that actually brought about this post.

what is wrong with saying this? OK for anyone that doesn't know this is wrong heres why...

You basically said Chemo doesn't work. I know I personally would not be alive today without Chemotherapy. So I can tell you it does.

It is negative. Although I am sad that your father lost his fight with cancer, this knowledge does nothing for helping me believe that I will live to conquer mine.

Dont forget you do not know how I am feeling that day perhaps even though I am out and about, that does not necessarily mean I feel all roses and sunshine. perhaps I feel like this last chemo treatment is gonna kill me because my bones hurt so bad. and even if you ask perhaps I dont want to tell you that I feel like doggie poo.

What else should you not do?

Don't compare my cancer with your cancer or your fathers cancer or your mothers cancer. Cancer is not chocolate chips. They aren't all the same. they feel different they grow different the treatments are different the only thing that is the same is the word CANCER. The radiation your Aunt Sophie got for her 1 cm lumpectomy, is way different than my friend Cynthia has been getting for her bone cancer. Aunt Sophie can still go to work every day, My friend Cindy can hardly get out of bed. See? not the same and its an insult to lump it all together like that.


what else not to do?

Don't send cancer forwards.

I cant tell you how many of these I delete in a day. I do not even read them. I do not need to have the it thrown in my face every day that I have cancer. the lack of hair does that quite nicely thank you. I don't need 27 copies of the same forward from 27 of my friends.

And as long as i brought hair up lets visit there for a second or so shall we?

don't say "it grows back" No kidding? Really? its not you who had a handfull of hair come out during an episode of House was it? has this happened to you? it hasn't ? then you have NO CLUE what that feels like so shut up. and dont stare. yea we have on a bandanna its COLD without hair the looks of "oh she must be sick" are awful. try not to do it. I know its hard but mind your own business i am just trying to buy some groceries.

OH and one more thing as long as i am on hair... and this came from the "queen of sensitivity" and Yes if you read this the comment did hurt and i think you know it.

"I like you better bald" well i dont people stare at you, its cold without hair, and WHY would anyone say this? you can say "you know your have a great head" which i can say now I do, its round... but dont say i like you better without hair thats just rude.

and that's what everything comes down to don't be rude and think before you talk. how would you feel if this was you? be KIND be nice.

DISCLAIMER:
I also want to point out for the record that I am not above saying and doing stupid stuff. I have been accused of not having a filter between my brain and my mouth. This is merely a guideline try your best because that is what we all have to do. And well if you feel like calling me up and saying "that post was the pot calling the kettle black" I probably wont deny it ;-P

3 month plan

My Muga scan was normal with a number of 52 which is just where it should be. We have more tests scheduled for Tuesday, a Cat scan with contrast (this will show if the tumors are gone) which we are almost certain they are. And also a base line Mammogram because due to the nature of the cancer they feel it could increase my chances of having breast cancer later on. So this will be one to show how I look now so we can compare others later.

Now for the three month plan:

IF the tests on Tuesday come back with the results he is looking for this is the plan. Group 5 and group 6 of chemo (that's a total of 4 treatments) and then we will move forward to radiation. I don't know how much radiation I will need but that I will need some because of the way my cancer presented. With all of the side affects in the beginning and the fact that it was considered "bulky" tumors. I had some questions about that and so we went over what the AMA suggests in my situation and we are going by the book so I guess I can't complain.

All in all I can see improvements every day. I feel stronger and I can walk around more. I don't get as tired as quickly as I used to. But when I do get tired that's when I know I have to sleep (last night I managed to sleep 12 hours) and today I feel dopey from it. But that will pass.

Patriot Day

President George W. Bush signed the resolution into law on December 18th, 2001. It is a discretionary day of remembrance.

Initially, the day was called the Prayer and Remembrance for the Victims Of the Terrorist Attacks on September 11, 2001.

On Septemeber 4, 2002, President Bush used his authority created by the resolution and proclaimed Septemeber 11, 2002, as Patriot Day.

Social Vibe

Please take note at my side bar that I have installed Social Vibe. This is a program that I have been Familiar with for quite some time on my social networking systems. This is a new addition to the "Gadgets" part of Blogger.

I LOVE having it here on my blog It allows you to raise money for various causes. Here of course I am raising money for The Leukemia and Lymphoma Society.

Please click on my link for more information.

New header

I would like to thank my sister for making this great new header for my Blog. if you are wondering what the poke-a-dots are, they are a slide of the cells that diagnose Hodgkin's disease.

so a great big thank you!

TREATMENT WITH A MEDI PORT

this is how they hook up my chemo... It is a really neat thing now.

the tiny white ring? in the center of that is a syringe needle that is short maybe 1/2 inch it goes strait back toward my chest. they plunge (yes thats the right word) strait into my port. the hard plastic backing keeps it from going through. but since they had to sever the nerve endings in my skin i barely feel a pin prick. that whole area now feels like it feels if you have a band aid covering your skin.

once they get my "rig" set up then they can do a flush and then draw off my blood sample for my weekly blood work. then another flush. leaving any blood in the port could cause the port to clog. thats really bad.

after they get my blood sample i go back to the waiting room and wait to see my doctor that take a about 30 mins. then i see him for a bit he goes over the results of my blood work with me then back to the waiting room for my treatment.

the rig they used for my blood draw is still right there (just like the picture) and they just hook into it for my treatment. I cant tell you how much nicer this is! I wish they had done this before i was this far along!

If i have any readers out there thinking about this.. If your doctor or a nurse has suggested this to you do not wait! talk it over with your doctor and get it done if he agrees. it is SO MUCH BETTER!!!!

PS... If you happen on this blog post due to a search, make certain you see this post as well... they kinda go hand in hand.... it shows what it looks like PRIOR to insertion

Double lumen medi port

HI!

At my last treatment they showed me a sample of my "double lumen medi port" I thought you might like to see what has been implanted under my skin.

The place where the line or "hose" as i like to call it joins into the port is just below my collarbone and the line goes partway up my neck and follows the vein down toward my heart.

the viens are much larger there and can have the medication at a stronger amount without needing to be diluted. where as in my arm, the veins are smaller and even with dilution, I was experiencing vein trauma. I wont have this now.

The port needs to be flushed once a month. and since i am getting treatment every two weeks they will flush one side of the port during one treatment and the other side at the next treatment. there is only one line though, so that will be flushed twice a month once with each treatment.

I bet you are all thinking wow cant you feel that? well yea the first few days home it felt like i had something in a shirt pocket that could fall out if i bent over. of course that wouldn't happen but its as close as I can describe it. it was sore for a few days. and it would swell in the evenings but i treated it with a cool jell pack and that helped. and if i move my neck just right i can feel the line in my neck. it doesn't hurt much now, it is just there. and if you feel the spot in my skin you can feel the round jelly like ports. its kinda neat but kinda creepy.

On a more personal note:

it carried a bit of mental baggage for me, it made me realize every second of every day that "yes you have cancer" I could not put that thought out of my mind for even a second. I have always been a guilt hound... thats someone that if we have a chance to take all of the blame we will. Well of course "you have cancer" comes with a huge guilt pile. not one that is true at least not in this instance. if this had been lung cancer from the YEARS of smoking sure but this they dont know where it comes from and i certainly didnt ask for it. so this last week was a kind of downer. but i am on the uphill now. feeling better about my port, and about the situation. I am more than halfway though my treatment. so i dont have long now.

I am certain this wont be the last time i have to deal with this stuff. just thought i would put that out there for anyone that things i am allways so positive. I just dont share all the garbage with everyone. there are maybe two or three that get it on a regular basis. and right now i am really glad #1 was on vacation... this would have been a tough week for her had she been home. I did OK without her here... Miss her though.

PS... If you happen on this blog post due to a search, make certain you see this post as well... they kinda go hand in hand....

say thank you

Chemo Mouth Solution

My Chemo taste was horrible this time, everything tasted bad.
Well the other night it was so bad, a glass of milk even tasted sour in my mouth.

Well, my science freak daughter looked at me and said "MOM! The PH of YOUR MOUTH IS WRONG!!!

I of course had NO CLUE what she was talking about but she still kept on with the lesson, she mixed me a glass of baking soda and water; and told me to rinse.

and Bingo! the taste was GONE only long enough for me to finish my dinner, but I got to eat! I will say this helped me make it though the last few days.

cuz chemo mouth makes you feel awful!