possible cure for cancer?

wouldn't this be wonderful?

Updates

Today is a big day concerning my blogs conception. I will be getting my Mediport out. For those of you who are new to my blog you can read about my Mediport in posts here and here. It was put in to help save my arms during chemo, in the operating room, but tomorrow they will remove it in the doctors office. weird right?

I will also be seeing my radio oncologist for a followup as well.

Friday night was my daughters senior prom. This is a group of she and her friends at out "town square" My daughter is the one with the white wrap. My Aunt Daisybell provided the wrap to my daughter as a present two years ago and we have kept it "for special" I was pleased she used it for this night. We will put it away with the dress after the next prom is over.

Michelle also asked me to paint her nails for prom. We did this while her date took a nap, (he lived a distance away and it was hard for him to rest here the night before) We were going to use false nails, but she decided to save them for his prom, as I will not be there to paint them for her. and even though you cannot see it, there is black light polish on them as well, I meant to get a snap of that and forgot. the line is painted as is a dot on each side of the line. i told her it looked like a %.

Radiation-induced pneumonitis

My check up went well.

My labs were EXCELLENT! My white is perfect, red is acceptable and my hemoglobin was spot on. This is the one they really watch because that is the one number that dropped so INCREDIBLY low when I was sick last spring. This made me feel better to know as well. With good labs you know that your blood cancer isnt back :)

We did a O2 test resting as well as while walking, of course I ran out of breath. But my O2 stats never went below 92 but 99 is where they should be.

He said my cat scan said that there was a "defined line" that showed swelling. The fact that it was a strait line that it is definitely caused from the radiation. It is called Radiation-induced pneumonitis.

I am now using albuterol and pulmicort to take the swelling and soreness out of my lung. The mere fact that it is from the radiation is why it feels "constricted" in the same area as where my tumor was originally. So I guess I was right when I said it felt the same. Before it was constricted because of the tumor whereas now the swelling from the radiation is what is giving me the constricted feeling. That certainly was scary as hell. It seemed so much as the way I felt prior to diagnosis I just *knew* it was back and I was going to get so sick.

Tonight I feel WAY SO MUCH better now that I have had a dose of my inhaler. I even had enough energy to go to Kmart.

Thank you everyone for your support during this scary time, and a big PRAISE GOD that this is not me getting sicker!

If by chance I do not improve, we will switch to oral steroids. I see him again at the end of the month

Healthy IceCream?

Ok yea I know I just said if you have to "healthy it up" whats the point?

This is less about diet and more about treatment. I had a recipe for Banana~Blueberry smoothie that I froze a bunch of bananas for. But smoothies went SOOOO wrong.

But I made something similar and it turned out more like icecream.

It is great for Breakfast since its "smoothie" type or as a snack in the evening. Chock full of antioxidants and fruit who gets enough fruit? But the big plus? It feels good on my sore throat.

My throat is sore from the radiation.

here is the recipe....

1/2 cup of plain yogurt
1 cup of frozen blueberries
1 cup of frozen bananas
maybe some milk

I put all the frozen stuff in the food processor with the chopping blade along with the yogurt. And I start to blend it all. If its too thick, I splash in a bit of milk. If its too thin I just keep adding more of one or the other fruit.

OK its not a direct science. The leftovers I put into the freezer in a freezer box, and I pop it in the microwave just to soften it a bit (it freezes super hard)

Feels good on my sore throat, wont ruin my diet, and I like it. But I dont like it so much that i will over eat on it. Too much in a serving and I burn out on it

Radiation Update...

Well everything looks good Doctor is happy i have no more side affects other than my itchy back which the ointment he gave me helps, so its all good.

9 radiations down and 8 to go almost half way!

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??

Dry Run

I go for my "dry run" radiation session today. I hope everything goes as planned and we can get started on it all come monday!

I have family and friends that have "signed up " to take me each day which will help with the gas cost as well as not inconveniencing any one person day after day.

thanks to all of you how have volunteered

Complete Response

Thats right! The words that I was given after my last scan was "Complete Response"

Apparently they do not always achieve this great of a response for hodgkins.

right now my chances of NON-recurrence is 70% after my radiation treatment it will be 95%

WOOT!

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.

Appointment yesterday

We went to Williamsport yesterday to meet with my oncologist. This is a follow up to my last Chemo appointment.

My blood work was fantastic he agreed that I looked good as well... I told him I still have fatigue, this is something we will watch over the next month and see if it gets any better.

I have been taken off the Lovenox blood thinner, and placed on Comadin. the blood thinners make me feel very cold, and I was hoping I would only be on it for a short while. He thinks I will be on this for a minimum of 6 months good chance of longer. He is having Dr Nespola follow my Comadin as I have to have that monitored weekly for med changes as my blood thins and thickens.

I meet with Dr. Nagel on monday. This is my radio oncologist. From what I have been told he has done extensive research and written papers on hodgkins disease. I feel already that I can relax and let this new doc make decisions for what is best for my health. from what I have read radiation can be daily M-F for up to 8 weeks. But this will all be up to Dr Nagel. Doc Pineda wont even hazard a guess.

All in all an uneventful appointment. But at least I got my port flushed while I was there. and Steve and I got our Christmas shopping finished.

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

Ring the bell

There is a tradition in the world of Chemo. when you finish your course of treatments you ring the bell on the last day. That day is today for me. I am going to get a picture of me actually ringing it, but since I wanted everyone to know that I ring today I stole the above photo to go with my post.

Awake early on this bell ringer of a day, I have a lot going through my mind. This is the first milestone in my recovery. As I still have radiation to go. along with the years to follow as a survivor that every cough, every swollen gland of mine will make me jump and think am I sick... Is it back... even though they tell you Hodgkin's doesn't come back i will forever worry about it. As I know my family will as well...

Enter elephant in the room here.....



I am excited and scared excited that i have been given a great gift. not once in my life but now twice. (i was very near death once prior due to another medical problem) What Does God have in store for me? the last 17 years I know it was to raise Michelle because her father wouldnt have been able to keep the promise that he gave me.

What adventure is next? I have no way of knowing. He has brought to me a whole host of new friends. but also a whole pile of unanswered questions. will i go back to work at BA? Will I ever be well enough? or even strong enough? Will life "pick up" where it left off? Is that even possible now? The dreams that I had then, do I still have them now? there is so much thinking to do...

But I wonder, do I even want to go over these questions? Life has been so "in your face" the last 6 months... perhaps I will just take some time off and not think about all this stuff.... and just LIVE after all isnt that what this fight has been for?

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

tests

Last week I told you of the odd bruising that had me to the doctors two weeks ago. well over the course of the last two weeks, that same arm has been retaining fluid. now because it wasn't a whole lot of fluid last week, i thought it was just chemo related. because i do retain fluid from the steroids. but this week (since Friday) the fluid just doesn't seem to dissipate, we have called the Doc.

So today we have a cat scan and an ultrasound scheduled for today around lunchtime. I believe that we are checking for blood clots again just to ensure we did not miss anything in the last set we did. which is why we are doing a cat scan this time.

I should have the results of this stuff by tomorrow as there is a new nurse in the office and she told me i could call her for the results. I will let everyone know

treatment 6-1

I go for treatment 6 - 1 tomorrow

I am going to be terribly honest right now... I dont want to.

I am such a sissy, and I hate myself for it. Some people do this for years I've been at it for 6 months and I am sick of it and I dont wanna do it any longer. The really sad thing? I have 2 yea thats right 2 treatments left. Well maybe after the one the week of thanksgiving I have to have a pet scan to determine if the cancer is gone. If it is whee ha on to radiation. What for? Who knows because the man that saved my life say so, if I am not cancer free I guess I get more chemo.

Well if I know I have only two, why am I so "lets not do this"?

It make me feel bad. It make everything smell bad. My hair started growing back while I was sick and its pretty thick now, but I think it will probably fall out after this treatment. So I get to loose my hair not once but twice. I know small price to pay for another 50 years right? OK so I am a big whiner



Also my dear husband is home sick with the flu. I had a fever for about 12 hours. Its gone now. But I know my home is CRAWLING with germs. He tries to contain himself but its a small house. You cant get away from it. I am so afraid of getting sick and not being able to have my last treatment. After all if I HAVE to have it to kill the cancer, isn't putting it off giving the cancer a chance to grow? And if there's no chance of that what is the point in having 6-1 and 6-2?

Oh I don't know! I know I really don't have a choice, if I stop the treatments and the cancer comes back I will forever blame myself so I know I have to do all I can. My heart goes out to everyone that is doing this for an undetermined amount of time. If I didn't know there was an end in sight I think I would totally trip out!

Sounds like tonight is a night for the anti anxiety meds...

reality

OK i haven't had a reality post here in quite some time.

The reality is:

I have Hodgkin's disease.
Chemo makes you sick but only for a little while
Yes it sucks
I feel better now than i did in June
After my treatments are over i should get better
HAIR GROWS BACK
whining does no one any good
sometimes you hurt and sometimes you dont
medication is because you NEED IT
you have every right to cry if you feel like you have to
but dont cry so much that you forget that you are getting better

thank God every day that you are alive.

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.

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