Friday, October 29, 2010

Almost Done!

So my final external radiation was last monday and my final chemo was the previous wednesday. They cancelled my internal radiation for yesterday so I have one on Monday 11/1 and one Thursday 11/4. I'm actually feeling pretty good this week. I'm kinda dreading next week and throwing up again all week but at least it's the end of the line for treatment.  It sounds like they are going to be doing another surgery, hopefully before the end of the year...my deductible resets and I'd have to come up with another $3,000 if its after the new year.

The girls at chemo gave me a gift basket. They get some donated and give them to patients. They said since they had such a rotten time of it I was deserving.  They are so sweet there. It really meant a lot.

Its funny. I seem to be more emotional about this whole thing now that treatment is ending than I was through the rest of it.  I'll tell you what though...It's just been really nice to be able to keep food down AND have it taste similar to what it should this week finally!

Wednesday, October 20, 2010

Hello all!

So I know I haven't updated in a while...I hadn't had a whole lot nice to say so I opted to say nothing.

I should have had my final chemo last monday, and my final external radiation on wednesday, but they decided that they wanted to do a boost to a certain area and added on a week of both.  So, I'm at chemo now getting my final dose, and my last day of external radiation is monday.  I have 2 more internal radiation treatments in Seattle, one thrusday the 28th, and one monday the 1st.

The first internal radiation treatment did not go well.  It was one of the top 4 most painful experiences of my life, it was supposed to take 4 hours and it took 7 and I would really REALLY care not to repeat that experience ever again.  The next 2 were not not near so bad. They dosed me up with the pain meds right away at the beginning to keep things from getting out of hand and they went much faster and smoother. Unfortunately though, the pain meds they use for the internal radiation make me throw up for about 4 days after the treatment. So, I have been spending every day at the chemo place getting rehydrated and iv anti-nausea meds.Throwing up sux.  Glad I'm almost done! 

Bonus though, I'm back at the weight I was when I met Meric.  He says I'm scrawney but I told him that he asked me out looking like this so he obviously likes it! :)

The radiation doctors are in consensus that my uterus needs to come out. The surgeon says she won't make that decision until she examines me which will be about 3-4 weeks after my final internal radiation treatment on the 1st.  Surgery sucks but I think taking it out would be for the best.  Bonus to that, if it comes out I can go on low dose hormones to slow my bone loss and chill out the night sweats a bit.  That would kinda rule.

Oh, I am also getting my 3rd blood transfusion today and tomorrow.  So, if any of you are still looking for something to do to help, might I suggest donating blood.  I'm using someones and let me tell you I very much appreciate it and would give back if I could but am unfortunately solidly on the receiving end for a while. But if any of you can, donate...it saves lives an gives those of us who need it a push through to keep fighting the good fight. 

Thats it for now...love you all and thanks for all the prayers thoughts and wishes.

And thanks to Dave for the bad ass owl...love him!

Saturday, September 25, 2010

SSDD

My son said that about his Spanish class, it's SSDD, same stuff different day. That's kind of how my life is now which I guess is why I haven't posted much.  I go to radiation M-F, chemo on M, and the rest of my life revolves around trying to eat, wishing I could poop or stop pooping depending on the day. I've been pretty exhausted so I just kind of lay around and save up the energy to do the necessary things. That's about it, not a lot else to report. Keeping my chin up...later.

Thursday, September 16, 2010

9/16

Ok so apparently I will never be good at this blogging all the time thing. I do want to say how much I appreciate the comments and all the love and support.  You guys are the best.

So lets see, I got my pic line installed, it's actually a Groshong line if anyone wants to look it up. It was a bit achy at first, but I hardly notice it now. It's a pain in the butt to shower because I can't get it wet so I have to tape off with plastic the whole apparatus at the bend in my right arm. Getting pretty good at washing my hair with my left hand though!

Chemo is a long day in a very comfortable chair. I get IV iron which takes about 1 1/2 hours, my anti-nausea meds, I get a bag of saline because the chemo is hard on kidneys so you need to be really hydrated and that's about 1 1/2-2 hours, as is the chemo itself.  The chairs are pretty bad ass. They are oversized and recline and are actually pretty comfy to sit in all day. I had my first treatment last Wednesday. It was good, all the people there are fantastic, I really really like the chemo crew.  They're good peeps.

The day after the chemo I felt great. The next day not so much. I threw up the whole way to radiation. When I got there they told me to make sure to take my meds every 6 hours and gave me some Lorazepam to settle everything down so I keep the Compazine down.  Well, it turns out I am allergic to the Compazine so I was a zombie for the next 48 hours. I couldn't eat or drink or function...I was either unconscious or crazy dizzy and confused. Finally in the middle of the night Sat night I decided I'd rather throw up than feel like I did on the meds. I did my best to eat and drink and catch up on Sunday, but didn't make it.  Monday I was so dizzy and sick I felt horrible.  They took 1 look at me at radiation and sent me to the nurse.  She  checked me out and I was pretty seriously dehydrated. So, I got to go across the street to the Chemo place and they gave me 2 bags of fluid and more IV anti-nausea meds.  I felt SO much better!  Had chemo again the next day (Tuesday) with different anti-nausea meds and I seem to be doing much better this time around.  I still feel pretty exhausted but I can eat and drink and other than tired feel pretty good.

Tomorrow I have radiation as usual, then I go to Seattle with a noon meet and greet appt with my internal radiation doc.  After that I get to go see my brothers new baby Johnathon Allen and give them the gift I got them. I hope they use the hell out of it! I'm so excited to meet the new nephew! And to see Jim and Becky.

I get Sat and Sun off, (thank heaven for small favors) then Dawn comes over Sun night (yeah!) for Chemo on Monday.

That's about it...later all :)

Monday, September 6, 2010

Tuesday 9/7

Ok so tomorrow, I go to Poulsbo to get my pic line installed and for my hour of chemo education. The pic line is kind of a semi-permanent IV that I can get my chemo and whatever medication they want to give me in, and they can also draw blood through it. It's kind of strange but will save me from quite a few sticks in the coming months, and if how my veins behaved in the hospital is their mo, I will be quite happy to have the pic line. I do have to get a chest x-ray to make sure it's in the right place and my lung hasn't collapsed (yikes). I swear I will be glowing by the end of this! :)

The get to know you radiation appt was interesting. Everything I read said that the chemo was worse than the radiation, but in my case it sounds like it will be reversed.  The good news about the chemo- I am getting a less strong version of what most people get because the chemo is being used to sensitize the cancer to the radiation treatment.  Hopefully that will mean less gnarly side effects. Oh and I definitely will not lose my hair.  Which strangely enough I had actually come to terms with. They say once you lose it and it grows back you get different hair, curly can become straight, and vice versa. I was kinda looking forward to different hair...trying to look at the plus side of all this...ya know?

Anyways, they did yet another CAT Scan while I was there. They take that with all my now missing parts, and overlay it to the PET Scan I had a couple weeks ago, and then the computer does a 3D model of my innards and runs lots and lots of math equations to figure out the best angles to shoot the radiation into the tumor while doing as little collateral damage as possible.  I am very fortunate to have had this happen now.  Not too long ago they just kind of nuked the whole area and hoped for the best. So when they lined me up in the CT they put sharpie marks on my belly to line up with.  Then when they were done with the scan, they put tape over the marks so they won't wash off.

I got back to the room where my mom was waiting for me, and showed her the marks. She said, "Well, at least they aren't tattoos" Right then the nurse walked in and said ok, we'll see you back here next Wednesday for your first treatment, and we'll get you your tattoos at that time as well. So, apparently I get tattoos to mark those spots so the tech can line the machine up with them so the radiation beams are accurate every time.

So just to recap, I get chemo once a week, and radiation 5 days a week, in Poulsbo. I also will have 3 high dose internal radiation treatments in Seattle, towards the end of the chemo and external radiation. I have a meet and greet with that doctor on the 17th.

Wednesday should be interesting. The appts didn't line up quite right so I have to be in Poulsbo by 8:30 to start chemo. It takes about 5 hours, but I have my radiation appt at noon same day. So, I have to unhook from chemo, drive across the street, get my tattoos, radiation simulation ( to make sure the computer is right) my radiation treatment, then drive back across the street to finish the chemo.  Hopefully things will be less hectic in the future with these appts. Thank god my bff Dawn is coming with me to chauffeur me around  and keep me company and stuff.  She rules :) We're both gonna miss our kids first days of school though :( I have mom guilt, but there's not a lot I can do about it. Being that I'm going to be an hour away.

Lotts and lotts of driving coming up. So, if anyone feels like sending on a good mix cd or books on cd or any listening suggestions, it would be appreciated.

I am also thinking of turning those tattoos into some other tattoo after this is over, so if anyone has any suggestions for that, or some other cancer surviving tattoo ideas, those would also be very much appreciated. Maybe I'll get it in that glowy ink...something's gonna glow damnit! :)

Think that's it for now. Night all :)

Followers

So for some reason it amuses the hell out of me that I have followers...yet at the same time it makes me feel suddenly responsible for those people. I don't want to lead them astray...like Helter Skelter or something. I watched mind of Manson last night...maybe that has something to do with it.

And then, I kinda want more.  I was never one to "collect" friends on the Facebook or Myspace, but followers, that's kinda rad :)

Monday, August 30, 2010

Sorry this took so long...

I know I swore that I would keep up on this, but I got busy the day before the surgery and afterword I was busy/tired/not in the mood.  I don't have a good excuse really, so I'm just gonna have to plead cancer and surgery and hope you all let me off the hook :)

I was going to start with the preop appt and take you all through day by day but I think that would take a while and I'd be repeating some stuff so I'm going to summarize. 

The preop appt went well. My doctor and her team are fabulous. I am in VERY good hands and I count myself very lucky to have the medical team in my corner that I do have. This all happened so fast so there was not any time for me to do any research or choose any of my doctors and I'm just so thankful that I got dropped where I did.

The PET scan showed the tumor and that the 2 lymph nodes closest to it were involved.  The plan was to make an incision from my belly button to my pelvic bone, take out those lymph nodes, any others in the area (she ended up taking quite a few) take out my ovaries and tubes since radiation would fry them anyways and she's already in there, biopsy the rest of my lymph nodes up to my chest, my bladder, and anything else in the area that might be involved. How far it had spread was the biggest concern and we have since gotten the results back that those 2 lymph nodes that showed up on the PET scan were the only ones and everything else is clear!  (VERY good news)

I had a really crappy night before the surgery. I was supposed to drink this laxative stuff that turned out to be carbonated so I ended up throwing up as well as going #2 all night. Nothing to drink after midnight so I was pretty dehydrated by the time I got there at 12:30 for my 3pm surgery.

They had a real hard time finding a vein for the IV. I did have to have general anesthesia this time, though they were going to put in an epidural for pain management after the fact. The epidural didn't go well. It hurt real bad going in, to the point of my screaming in the OR, and as many can attest, I'm pretty damn pain tolerant when it comes to my back.  The surgery lasted about 4 hours. After it was over, I woke up and they turned on the epidural and one small circle on my thigh went numb.  That was it.  The anesthesiologist kept jiggling it and putting in more meds, but I still hurt QUITE a bit and that spot on my thigh just kept getting number. We all finally gave up, they took it out, and  gave me the morphine button in my IV. It worked so I was happy.

I didn't hate the hospital as much as I thought I would.  I didn't feel real well the first day after. Turned out my iron level was real low so they gave me a liter of blood.  It wasn't much better the next day so they gave me another one. Apparently that first day I gave new meaning to the word pale.  I found out my veins don't hold up very well to IV's. They seem to be good for 1 use only so I have quite a few bruised holes all up and down my arms.  Everyone in the hospital was incredibly kind and compassionate however. They were very busy but were all very good at their jobs and very helpful.

I got stitches instead of staples which made me happy. I can shower which makes me REALLY happy. They let me go home Saturday afternoon. The ride home was pretty hellish. The nice people at the ferry saw my hospital bracelets and let us jump in line instead of making the 90 minute wait which was also a big bonus.

Doin pretty good now. Still a bit sore, but I'm off the narcotics already. Trying to walk as much as possible but I get tired pretty fast still. Had my dad drop off my COBRA check to my old job. I don't know if you all heard but when I called my job and let them know I have the cancer they let me go.  Way to kick me when I'm down eh?  I've kind of come to terms with it though. Feces occurs. Quite a bit these days it seems, but it all definitely could have been much worse.

I have my meet and greet with my radiation doctor tomorrow at 10:45. I'll do my best to write how that goes tomorrow.  Thank you for all the prayers and well wishes and cards and the love sent my way. I appreciate it so very much, and am very glad that you all are still talking to me, like a human even, not like I've got the plague :)  Love you all, I'll try to keep in tough, you all do as well. 

Monday, August 23, 2010

PET Scan

Had my PET Scan today.  It was rather interesting.  I found out why the strange diet the keeping warm.  So cells like sugar right? Well apparantly cancer cells like sugar WAY more even than normal cells. Also muscles like sugar, especially when they're cold or when you use them. So, the reason that I couldn't have any sugar or carbs and had to keep warm and not exercise was to starve my system of sugar. 

The isotope they gave me in my IV after I had the Valium, is bonded with glucose.  You have to lay still for an hour after they give it to you because they don't want your muscles or any other cells sucking up the isotopes and glucose, only the cancer.  That way when they do the scan, the cancer is much easier to see.

Taking the Valium made me a little nervous because I didn't want a repeat of the last time I was on any pain/relaxant pills but it wasn't so bad. My head got a little floaty and then I went to sleep/became unconscious for abut 40 minusts.  Then I woke up/came to and was really bored for the last 20 minutes or so. Then the girl came back and I had to drink the lemon lime barium juice...yum.  I just made myself take a sip every count of 10 and got it down in the 20 minutes I had to drink it in.

Then I went into the CAT scan room. I laid on the little platform that they slide you in and out on.  It was a much deeper tunnel than other CAT scans I've seen. It almost looked more like a MRI machine than a CT. They put yet a 3rd radioactive contrast in my IV and did the CT scan.  Then they started the PET which seemed like a really slow CT that you could breathe during.  It took about 40 minutes and you can't move at all. That was it, they took out my IV and I was on my way at about 3:30.   To get some food cuz I was starving.

Oh, and the strangest part, I'm now radioactive. Unfortunately I don't glow in the dark (I checked), nor do I have the urge to put on tights and a cape and fight evil, at least not any more than usual.  The down side is I can't touch anyone, including my dogs whose feelings are all hurt cuz I couldn't love on them when I got home.  Apparently I won't be radioactive tomorrow though so I'll have to give them double love then.

Preop appt tomorrow at 11:30. I will have more details about the surgery then.  Take care everyone!

Yesterday...

So, I didn't write yesterday.  I know bad monkey. I got on the ACS website and looked up what stage cancer I have, and then what my 5 year survival statistics are.  Needless to say I was rather unimpressed with the number they gave me.  I knew this shit was serious, but that number really scared the shit out of me.  It took a bit of moping and smart ass remarks, but I think I've decided that I just have to make sure that I am one of numbers that make it so that's that. 

We also got the bed we bought the other day set up in the office. We moved my computer desk out into the kitchen, and got the tv in there talking to Meric's computer so I can watch Netflix on demand while I'm stuck in there.

Meric made me a fab salad for lunch, and then a seriously yummy dinner following all the rules for my PET scan diet. Steak, broccoli, and asparagus.  YUM! I'm so lucky to have such a wonderful man for a husband. He helped me so much with all this. He rules.

Saturday, August 21, 2010

Today

So today I finished my laundry so I can stay warm tomorrow and the next day for my scan.  I got my hair cut a bit shorter because though it was short, it still took a bit of styling to get it to look decent. Now it's not as cute, but way more functional. I also went to the farmers market downtown to get a couple more hats from the fresh hats lady.  Whether I lose my hair or not I still think they'll come in real handy. Plus I really like them :)

I took Daniel school shopping for his first year at high school...no uniforms this time! It's much more expensive this way btw. I also picked up some comfy clothes for my upcoming adventures. Oh and microfiber sheets for the new main floor bed.  Ate dinner at the new IHOP in town. Love the pancakes!

I'm real glad I got a couple of days to get stuff together for Daniels first day of school, and to make plans for myself as well.  It makes quite a difference.

I do really feel bad about poor Roux.  Here we adopted her and she's being kind of ignored. I missed our first PDM obedience class Thursday night, and am not going to be able to take her to any for quite some time.  I don't really feel that I'm doing right by her but I'm also not sure what to do about it. 

Anyways, that's about it...peace!

PET Scan Instructions

PET/CT PATIENT INSTRUCTIONS:
Begin your fast 6 hours before exam.
Last meal before you begin your fast should be a high protein / low carbohydrate meal:

DINNER (For AM appointment):
Grilled or Baked: Steak, Chicken, or Fish
Any green veggies - if a salad, vinaigrette dressing only, no croutons; cheese is OK
Drink 6-8 glasses of water the evening before your morning appointment.
One diet soda is ok or 2 glasses of red wine (optional)
ABSOLUTELY NO POTATOES, RICE, PASTA, BREAD, FRUIT OR FRUIT
JUICES, CAKES, CANDY, COOKIES, ICE CREAM, AND/OR GUM.

BREAKFAST (For PM appointment):
2 eggs (any style), bacon, sausage and black coffee (no cream or sugar)
Drink 6-8 glasses of water before your afternoon appointment.
ABSOLUTELY NO POTATOES, RICE, CEREALS, BREAD, FRUIT
OR FRUIT JUICES, CAKES, CANDY, COOKIES, AND/OR GUM.
Coffee may be consumed the morning of the procedure, ONLY IF THERE IS A 6 HOUR TIME SPAN
BETWEEN THE TIME OF CONSUMPTION AND TIME OF THE EXAM.
  • No exercise for 24 hours before exam.
  • Stay as warm as possible for the 24-48 hours prior to the exam.
  • Dress warmly, avoid clothing with any metal.
  • Mild muscle sedative (Valium) will be given 30 minutes before the isotope injection.
  • You must have a driver.
  • Please bring any recent/prior films you may have, especially PET or CT scans.

Please ensure that the time of the appointment you have chosen will be convenient for you. Due to
the short half-life of the isotope and the sensitivity of the scanning sequence, the schedule must be
adhered to in order to produce the best images possible. Please give at least 24 hours notice for
appointment cancellation.

PET/CT – What to expect:
  • Blood Glucose check
  • An IV will be started
  • Valium will be administered
Once the injection of the radiotracer has been administered, you will be asked to relax and remain
absolutely still for 45 min. in a quiet and dimly lit room.

  • No reading/listening to music allowed due to muscle activity. 
  • Oral Contrast will be given after about an hour
  • Scan is performed about 90 minutes after the radiotracer injection, and will last for approximately
    30-45min.
  • Appointment time is approximately 3 hours.
  • Family members are not allowed in the suite during the appointment.
  • Scan results will be forwarded to your ordering physician usually within 24-48 hours
Ok...here we go. So I decided to make a blog to keep everyone updated on what is going on with me because I know everyone wants to know what is going on but it is tough to contact all individually.  

As of now I have been diagnosed with a 10 cm. x 5 cm. x 3 cm. cancerous mass on my cervix intruding into my uterus.  It has spread to at least 1 lymph node, probably 2, maybe 4. Monday I will go in for a PET scan to see just how many lymph nodes are affected. 

Tuesday I go in for a pre-op appointment at the Ob/Gyn Surgeons/Oncologist office. The PET scan results should be there and that will decide how many lymph nodes they are going take out on Wednesday. 

Wednesday at noon I will have surgery to remove all affected lymph nodes. 

After I heal from the surgery, (6 weeks give or take) I go to 6-8 weeks of radiation and chemotherapy to shrink/mostly kill the tumor. After that, I will have another surgery, where they will remove my cervix, uterus, and what's left of the tumor.  About another 6 weeks to recover from that then I should be done.

Everyone keeps asking if I'm scared.  Of course I am, I'd be crazy not to be. The chemo scares me more than the surgery does, though the surgery is more imminent.  

I was a bit concerned about my bedroom being on the top story of my house, but we found a really good deal on a tempur-pedic adjustable twin bed on Craigslist that we are putting in the office off the kitchen so I can sleep in there when I am not up to mounting the stairs. 

I think that's about it for now.  Feel free to ask any questions you may have that I haven't addressed.

I'm also going to post the instructions for the PET scan because they are rather strange and I found them interesting and I thought some of you might as well. 

Later all.