Much belated updates May 11, 2012

Let’s see….. it has been 15 months since I finished my last radiation appointment.  Just got to thinking that maybe I could update those of you out there that don’t hear from me all the time. =)

I am officially in the “well patient clinic” now.  Cancer free for 3 mammograms and 1 bi-lateral breast MRI.  That’s right, this means that I have now bared my chest for even more innocent bystanders.  I have truly lost count now.  At least two more interns with my Radiation Oncologist, a doctor subbing for my Radiation Oncologist while she had a baby, many nurses and techs in the mammogram and MRI departments.  Where does that leave me?  Somewhere around 1,000, I’m sure!

The good news is that it has officially been 1 year cancer free.  I will continue to have mammograms every six months, alternating between just the left side (where the cancer was) and both sides.  So every six months I get to have at least one boob squished and once a year I get to double the fun.  Good times.  Really.  Also once a year I get to have the bi-lateral breast MRI.  That’s right – you guessed it.  That means that I get to lay face down on a table (if you can call it that – it’s about as wide as a 3-ring binder), with my girls hanging in “cups” and spend about 12 hours in the MRI machine.  Ever been in an MRI machine?  VERY loud.  They try to make it better by giving you earplugs and headphones playing music.  Yeah – that doesn’t help.  I gave up on the music last time, it just adds to the cacophony of noises.

For those of you who have not seen me (there are a few), my hair has grown back in.  At first it was REALLY curly, but that has gone away.  It is darker though.  I don’t notice it, but that is what I hear from folks that haven’t seen me in a while. It’s hair – I don’t do much with it so…..

I will continue to be in the higher risk for recurrence for about four more years and then my risk will be the same as everyone else.  We’ll take it six months at a time for now.  I have other things to do – PTA, Girl Scouts, family, college (for me and my oldest! yikes!) so I really don’t let it worry me.

I am, and will continue to be, a breast cancer survivor!

The Hair Returns! (Formerly It’s Back!) March 23, 2011

Oh my gosh!!!  I’m so sorry.  It was just pointed out to me that perhaps the title It’s Back for a cancer blog title might give people the wrong impression.  Can you believe that I never thought of that???  I was just happy that the hair is back, it was the only thought that came to mind.  Sorry guys!

Just thought you might want to see that the hair does come back in!  And, in my case, it’s coming back in curly!

I’ve had to have my brows waxed too!  Argh.  Oh well, that should be good news right?

It’s a Wrap!

I’m such a bad blogger!  I went all the way through radiation and never posted.  Then went all the way through Girl Scout Cookie Sales and didn’t post.  Then went through Day Camp Retreat without posting!  Jeez!  Sorry everyone.

Well, let’s do the wrap up, shall we?

Radiation was really a breeze.  I would go in every day – yes EVERY day.  Well, Monday through Friday.  And not on holidays (yes, President’s Day is a holiday).  Apparently, cancer does not grow on weekends or holidays.  Works for me.  I’m thinking of changing careers to become a Radiation Therapist – lots of days off.  Anyway…. I would go in, scan my card to check in and wait for them to tell me they were ready.  Go change from the top up and put on the robe (opening in the back).  My Therapists (there were many throughout the six weeks) would say they were ready for me and I’d go into the Linear Accelerator room and hop onto the table.  My little foam mold of my arms and head would be waiting for me at the top of the table and I’d line myself up in that and take my arms out of the robe and grab the “oh shit handle” above my head.  Here is where the Radiation Therapist makes his money.  Now they had to make sure I was “plumb”.  Utilizing my tattoos on my sides, they would level me, then using the tats on the top, they would line me up – all with lasers.  Once plumb, now they had to use all the math calculations that they had figured out to set me at the distance I needed to be from the machine. (95.7 cm, then 11.9 cm left, then .8 inf)  Got it?    I’m sure you have a crystal clear picture of what I’m talking about.  Of course, each week they would have to take x-rays to see if everything was still lining up, and those numbers did change sometimes.  The most important thing to remember here is that here I am, naked on top with at least 2 (sometimes 3 or 4) people in the room checking the measurements while my hands have a death grip on the bar above my head, my feet are rubber banded (makes it easier to stay on the table if your feet can’t move), and I’m not allowed to move an inch, or we get to start over.  I KNOW, right – you are all jealous.

Now they get to be artists.  Kind of.  Every day they would draw on my chest with washable markers where they had to line up the last field.  Fun huh?  Here I am, telling Katie to stop writing on herself and I have marker all over me!  I told her that if she wanted to make little pictures on her chest in school, I guess I could make an exception.  She didn’t take me up on that.  Weird.  Well, once plumb, distance correct, picture pages drawn, and properly cold (it’s just above freezing in the room) we get to begin.  The big machine rotates above my head and shoots out the radiation in the correct angles and depths.  There were three different positions the machine had to shoot from.  The first two were administered with the original set up, just different angles.  The therapists would go out of the room and shut the big bomb shelter door and work on the computer.  Lest you think that I would be lonely, or could breathe a sigh of relief that at least no one was looking at me, let me assure you that this is high-tech!  I was being watched the whole time on camera.  Fabulous.  That way, they knew if I actually decided to sneeze or cough, or scratch my nose.  By the way, have you ever been told to lay half-naked with your arms above you in a VERY cold room with cameras watching you and then told “DON’T MOVE”?  The very first thing that happens is you begin to itch.  A few times I was certain that a bug had crawled into my ear and was burrowing toward my brain. That is SO comfortable.  Not.  Anyway, the third dose of radiation had to be delivered at a different angle and a bit shallower.  For this they used what is called a “cone”.  It looks like the frame of a box kite (kind of) that they slide a thick plate of iron with a cut out into the bottom of the cone.  This plate has a cut out in it that allows the radiation to go through a very specific shape.  My cutout was kind of a long rectangle, with a little bit of a jog in it.  Once they got that set into the machine, there was a distance I had to be from that (100 cm if you were wondering).  This distance was a little close.  My right breast was smushed to be exact.  Every time someone new would be in the room, the guys would have to tell them that it was OK – I was going to get smushed.  They were all very worried about me, and very nice to me about it.  Whatever!  I just wanted to get through this – I could take a little smushing.  Kind of like the cat stepping on me (why DO they do that?)  They would leave the room, shut the bomb shelter door and begin the radiation.

This happened every day for 5 weeks.  The last week, they worked only on the area of the original tumor.  For this they had to draw about 8 different fields on my breast with those lovely markers.  All in different colors.  Luckily, that was just once when they were doing the calculations.  I looked like some sort of bizarre art where they were trying to diagram what different blobs of goo would look like if you dropped them from a height, and they splattered.  Once they got it all figured out, the last five days were pretty simple.  Get me plumb, and distances correct, then the table would rotate along with the accelerator.  There were four different positions they would administer the radiation from with my table at different positions.

Pretty simple really.  I was flying through this with no reactions really.  My doctor kept saying that my skin looked great and when I would tell her I felt fine, she would be surprised.  Yeah – that ended the last week.  My skin started to break down and I got REALLY tired.  Even with that though, they said that my skin was much better than they expected.  When I told her that I was really tired, she said “Well, it’s about time!”  She wanted to know if I needed a doctor’s note for work because I probably should take some time off.  I ended up taking about a week off out of necessity.  I was exhausted and the skin breakdown was pretty painful.  That lasted for about a week, and then I was pretty much back to normal.

I know you are all dying to get a final count of the people who have a familiar knowledge of my breasts.  Well, I can tell you that there were 10 Therapist in the department and I saw them all (or rather they saw me).  Plus, there was the dosimetrist, 2 interns, 1 visitor from some other department and 2 oncology radiation residents.  So, 16 more?  What is that now?  I’ve lost count.  Over 50, maybe over 60.  And the good news is this.  I get to go in for mammograms every 6 months.  I already had a bi-lateral MRI and mammogram – so that is three more people to add to the list!

I am now officially in the well clinic.  I get to go in every six months to meet with my radiation oncologist and my oncologist and have mammograms.  I do this for two years and then I go in every year after that.  So now we wait for the 5 year mark when my chance of recurrence is the same as everyone else.  But for now, I’m cancer free.  My MRI and my mammograms from last week came back clear and we just wait for the next 6 month check up.

Thanks to all of you for caring to follow along!  I love you all for the support you gave me through this.  Many hugs to you all.

Life After Chemo December 18, 2010

It does exist!  Life after chemo that is.  I have been horrible and not posted in over 2 months now, mostly due to the fact that I really wanted a break from the whole cancer thing.  Weird.

So here is what has happened in those two months.  I finished my last two chemo infusions.  THANK GOD!  They both went off just like the others.  I had to have copious amounts of Benadryl and steroids and I STILL had a reaction to the drug.  That lovely spasming of my lower back.  Oh well, I managed to get through those – they only lasted a couple of minutes and I just grunted through them.  The joint pain was horrendous!  By then end of these treatments, I was dreading Wednesday.  That’s when the pain would start.  When chemo was over, the pain actually continued for about 3 weeks where it was still pretty bad.  Now, I have sore joints in my hips and back, occasionally other joints, but it’s all manageable.  Especially since I went back to taking Aleve.  I said screw the HS (if that is what I have) and I have to think quality of life here!  A little Aleve won’t kill me.  At least that is what I am going with until I meet with the hematologist again.

Now that chemo is over, time to start thinking about radiation.  I went in for my “simulation” appointment.  That was interesting.  They took me into the radiation room, after I got undressed from the waist up and put on a robe of course, and I get to lay on the table.  Here is the interesting part.  They mix up two liquids in this large pillow case thing.  When these two liquids combine, they create a foam that will harden and become the mold that I lay in each time I go in for radiation.   Before they get that mold going, they place me in the machine to get the readings for about where they want to place me.  This whole time I am bare naked up top, so you guessed it – numbers 39 & 40!  Of course, they really don’t care, they are focusing on exactly where the table is placed.  Once they are happy with that, the mix the liquid and place it under my head.  My hands are gripping a rebar post above my head and the “pillow” get placed under my arms and head.  Then it starts to expand.  Very weird.  At least this stuff is warm!  It was freezing in there!  What is it with that?  Why do the rooms have to be so dang cold?  Is it just me?  Probably being naked has something to do with it.  Anyway, they press down on my elbows so that the foam does not push them up and the foam just expands around me creating a Tina Head mold.  Now, comes the really fun part!  I get tattooed.  Not even a cute smiley face or a pretty flower.  Just four dots – two on my chest and one on each side.   All this while laying in my mold with my arms up over my head and the two technicians passing a tattoo needle between them to mark the spot!  Once they are happy with the spots ( it took twice on one of them), they go to the back room to take pictures for the doctor.  Take your time fellas – don’t rush on my account!  Me and my goosebumps will just hang out here.  Sheesh.  The doctor was happy with the pictures, so now I get to get up and get dressed.  Not so easy.  My left hand is clasped around the bottom of the rebar and the foam grew around it and I can’t get my fingers to loosen!  Ummmmm… what now??  Well, before panic set in, I managed to get my hand out of the clever trap without anyone the wiser.  I’m not sure if I’ll be able to ever get it back into that exact spot again, but not my problem.  So now when I go in, I will lay in the mold and they will line up the lasers across the four dots and I will be ready to go.  Whoopee.  Radiation here I come.  I expect the boobie flash number to really skyrocket here.  Any guesses anyone?  Six weeks, 5 days a week!  Could be different people every day, or maybe I’ll have the same person each time, who knows?

Almost forgot!  I got my port out!  Hallelujah!  I went to the SCCA this time instead of the UW hospital for this procedure.  The doctor was very nice and explained that the body does an incredible thing – it creates a little pocket around the port of a thin filmy substance (not tissue) and he will cut through this cocoon to take the port out.  The body will absorb the cocoon and I shouldn’t feel any bump in that spot.  Kind of cool.  So, I’m getting ready to get wheeled into the procedure room, and I get asked if I would mind if people from the hospital’s accreditation company observe the procedure.  Sure, why not?  The more the merrier I say!  I figure it will do one of two things, make the doctors and nurses so nervous they freak out, or it will make them take that much extra care to make everything perfect.  I’m betting on the latter.  The procedure goes just fine.  I was expecting the number of people I have flashed to go WAY up with this one, but NO!  Doc was especially careful to not expose me at all!  Nobody got a peek, so we stay at 40.  Now I just have a scar for the memory of the port.  Works for me.

While I was in the waiting room waiting to get my IV placed before this procedure, I had a reality check.  We were sitting across from two women who had started up a conversation.  Both of them obviously were going through treatment, because they were sporting the racing ready head that I am.  Turns out, one of the women, who is 40 now, had breast cancer when she was 25.  Then another type of breast cancer when she was 35.  Now she has leukemia.  They think because of all the chemotherapy she had.  She was getting ready for a bone marrow transplant.  The other lady, probably in her 40’s, had Hodgkin’s lymphoma.  She had just had her bone marrow transplant with her 16-year-old daughter as her donor.  The gentlemen next to us had just got word that they had found a donor for his bone marrow transplant.  Yikes.  When both of the ladies had been called back for their blood draws, the mom of the one that had breast cancer twice asked me if I was getting a bone marrow transplant too.  I told her “No, I just have breast cancer!”  And I have to tell you, I felt pretty damn lucky.  Goes to show that the saying is true, it could always be worse.

I also got a call from my hematologist.  He wanted me to go get blood drawn so he could see if my red blood cell counts were coming up.  I did not have to have any more blood transfusions – I got to stop at 7 – and he wants to make sure that my body can actually produce red blood cells.  Okie Dokie.  Turns out, I CAN produce them.  Amazing things can happen when you don’t have poison coursing through your body!  My counts went up to 33% and 11.  Which is on the low-end of normal, but fantastic for me!  Dr. Miller was very happy with that and said that he would set up an appointment with me in a couple of months when my body had a chance to replace all that foreign blood.  This way, he can re-run the tests and see why I am so anemic.  Allrighty, Doc!  See you in a couple of months.

But first, before radiation and before any more blood tests, I get a break.  I thought in the beginning that I would just want to get this all done with quickly, but it turns out, I needed a break.  Thanks to my family and friends, Dave and I got the most unbelievable vacation I think we have ever had.  9 days in Maui.  Paradise.  I sit here in the condo that my sister and her husband are letting us use, looking out at a million dollar golf course, with the sun shining and the birds chirping.  It is amazing here.  I had planned to work on my blog while I was here and do a couple of other things, but honestly, it all seemed like so much work and I would rather be outside!  I have been snorkeling every morning and just enjoying the 80 degree weather and the stunning scenery of Maui.  I don’t know how to thank everyone that got us here – Tammy & Brett, Mom, Jolene, Becky, and Adam & Tiffany – there aren’t words to express how grateful we are.  Thank you.

I’m going to enjoy our last day here and then it’s back to the rain!  But it’s also back to my girls, whom I miss very much, so it’s not all bad!  I get to start radiation on Monday, well, actually Tuesday since Monday will be a dry run I guess.  They will place me in the mold and see if everything lines up and then the fun begins on Tuesday.  But, I’m not going to focus on that!  I want to enjoy Christmas with my family and just enjoy being able to do that.

Thanks to everyone for caring enough to keep up with me on this journey.  I know it is not over, it will never be over, but it will be better.  There is life after chemo – and now I get to live it.

Merry Christmas everyone!  And may the New Year be filled with much joy and happiness for us all!

Dave & I in Maui

Check out the fuzz!  Think I’ll need a haircut soon?

It’s Official – I’m a Medical Freak! October 5, 2010

I always suspected it, but now I have to just embrace it.  When you hear over and over again things like “Hmm, we’ve never seen this”, or “You are just one of the 5% of people who have no reason for this”, or my favorite “That would be rare as hen’s teeth”.  All actual quotes from different doctors.  I’m guessing that hen’s teeth are pretty rare, by the way.

The hematologisit doesn’t know what is causing my anemia.  All the obscure tests they ran came  back normal.  The other tests they can run requires them to look at my blood under a microscope.  One problem there, the blood in my body is only 1/3 mine on a good day.  So – now we wait for this to be over and the blood transfusions to stop so I can grow my own blood that they can test.  The working theory right now is that I might have a condition called hereditary spherocytosis.  In HS the red cells are smaller, rounder, and more fragile than normal. The red cells have a spherical rather than the biconcave-disk shape of the normal red cell. These rotund red cells (spherocytes) are osmotically fragile and less flexible than normal red cells and tend to get trapped in narrow blood passages, particularly in the spleen, and there they break up (hemolyze) leading to hemolytic anemia.  Jeez – even my blood cells are small and rotund!

Of course, we won’t know this diagnosis until they can test my own blood, so I’m not sure when that will be.  I did not need a blood transfusion this week, which shocked the heck out of me considering how I’m feeling.  Just walking to the living room is an ordeal.  I’ve actually just requested from my nurse to see if we can get one.  I’m officially a vampire, and I’m feeling about 2 pints low.  So this would be number 7, I think.  Yep, just check the last postings.  I’ve had #6 late in September and this will make #7.  Creepy!  Maybe the last one though.

We met with my Radiation Oncologist, Dr. Kim, a very nice woman.  We went over the effects of radiation – the fatigue it can cause, a burning of the skin, they will scar the left lung, possibly the heart (though they try to minimize that), and they will radiate my ribs, making them weaker.  Nothing that can’t be managed, but just be aware of.  I get this information from Dr. King, Dr. Kim’s resident.  He then needs to do an exam, and since I am a girl, he needs to bring the nurse into the room to observe.  (Numbers 37 & 38, for those still keeping count.)  This exam was so much fun.  He dropped my gown down and asked me to lean forward and flex.  Yes, flex.  Like Mr. America flexing his pecs.  I don’t have pecs.  I must have done what he wanted because he said it looked great.  Then I had to hold my arms up, then lay down so he could physically examine the breasts.  Wow, was it good for him?  He said everything looked great.  Perfect. 

Then Dr. Kim comes in and we go over when to schedule radiation,  It turns out that they like to wait 4-6 weeks after chemo to begin radiation.  Oh – we didn’t realize that.  We had told Dr. King about our trying to go to Hawaii in December, so Dr. Kim said that we absolutely should take that trip and have some down time from cancer and time to recuperate.  I go in November 8th for a planning session, where they put me in the simulator to see where they need to place me each time for radiation and where to point the computer.  Then the radiation will begin on December 20th.  Ok, not what I was hoping for, we won’t be done by the end of the year, but honestly, I think I can use a break.

I only have 2 more chemo doses.  Thank goodness.  I think they are taking a toll on me for sure.  The joint pain is awful.  Especially now that they have asked me to stop taking any Advil, Aleve, etc.  Apparently, if I have hereditary sphercytosis, this can complicate things.  I CAN take vicodin, though.  Great.  I can take that and be in a drug induced stupor for hours afterward.  So now, Thursday & Friday, I work from home in between the drugs.  Saturday & Sunday are spent lying low and taking more vicodin.  Fun times.  I only have to get through three more weeks of that!

Dave and I were talking, and it has been 6 moths since diagnosis.  Hard to believe.  I still can’t believe that my little bump turned out to be cancer.  What a ride this has been.  I don’t ever want to do this again, and I recommend that you all avoid it at any cost!  Dave had some good advice for me.  Wait for it….don’t get cancer again.  He is a true genius.  I love him dearly.  But honestly, I think I’ll try to take that advice!

Until next time!  Hopefully that will be sooner than a month from now!

A Request October 4, 2010

This is Tammy, Tina’s sister, I am trying to send Tina and Dave to Hawaii this December after all the chemo and radiation. I reserved my timeshare in Maui for December 12-19th. I am looking for anyone who can donate Alaska Airline miles to her account, which is 10971121. Since it is around the holidays, it is costing …55,000 miles per ticket. It costs $25.00 to donate 10,000 miles, if you don’t have Alaska Airline miles, but would still like to donate, it costs $25.00 for every 1,000miles.
Now I know she has a lot of friends and it would only take 11 friends to donate 10,000 miles each to make our goal. I want to make this trip as cost free to them as possible.
If anyone has any connections with car rentals that would be great!
Thanks,Tammy

Dang! September 1, 2010

Double Dang!  Since my last post (almost a month ago – AGAIN!) I’ve had to have another blood transfusion.  Yes, that makes 5 now and 10 pints of other people’s blood.  Seriously creepy.  Right now the blood in my body is only about 1/3 mine.  Or so my hematologist says.  I’ll get to that in a few minutes.

First, let me tell you how the Taxol treatments are going.  Better than the AC.  But, it’s still chemo, and there of course has to be a down side, right?  Right.   The first couple of transfusions, they give you 50 mg of Benadryl in the IV, since there is a chance of allergic reaction.  So, here is what happens, I get the Benadryl, then some steroid, and night-night Tina!  Of course, then in comes the pharmacy tech about 10 minutes into my drug induced slumber and has to double-check that I am who I say I am.  “Please spell your name and give me your birthdate”.  Really?  I can’t even open my eyes!  I’m sure I sound something like I’m totally drunk when I give her my info.  She leaves the drug, so I’m assuming she could understand me, but I really can’t see how.  I couldn’t understand me.  Once the steroid is finished infusing, they start the Taxol and I sleep through the entire thing.  When it’s done, I have to wake up and make it to the car for the ride home.  Which I manage to do, but I’m sure not good company for the drive. 

So after the first two doses of the Taxol, the nurse says I can try to skip the Benadryl since I haven’t had any reactions.  Cool.  Well, turns out, without the Benadryl, I have quite a reaction.  On the third dose, they give me just one pill (25 mg) of Benadryl by mouth and then some steroid by IV.  We start the Taxol and about 5 minutes into it – HOLY CRAP!  Um,nurse?  My lower back is having spasms.  Like someone has it in a vice and is twisting.  So, we have to stop the Taxol and give me a shot in the IV of Benadryl.  We finally get underway about 15 minutes later, and things go without any more issues.  So – Benadryl it is every time now.  Lovely.  Turns out, even with the Benadryl I can have a reaction.  This last Monday, my nurse decided that I could try to go full speed on the Taxol.  Apparently, she normally started the drip off at half speed for about 30 minutes, then put it up to full speed after that.  This time, I was full speed ahead Scotty right from the start.  Again, 5 minutes into it, I wake up with my back in a vice and a screaming headache.  What the heck?  Is the Benadryl working?  Yes, but here is what we learned from the on-call chemo doctor that had to be called to my room.  Taxol is not a soluble substance.  In order to make it a liquid, they have to mix it with a detergent.  That is what I am having the reaction to, not the actual drug.  I’m wonder where he is going with this.  Am I going to have to take some un-soluble version of Taxol?  Is that even possible?  What would that look like – some big block of Taxol that I have to try to eat each week?  No.  Just giving me information, I guess.  He doesn’t tell me what kind of detergent, so I guess that’s not important.  I guess I can just stay away from eating any type of detergent and I’ll be OK.  Anyway, he orders some more steroid since he figures 50 mg of Benadryl is good enough.  The nurse informs him that she sped up the infusion, and they figure that was the problem.  According to Dave, I was not ready for “big girl” infusion.  He’s funny.  Of course, they also decided to put my speed down to half for about one hour, making this transfusion last about two and a half to three hours.  Lovely.  I guess, it’s another late dinner for us.

I met with my oncologist again, and she was completely baffled about my red blood cell problem.  I think I probably kept her up at nights.  She has never had someone need as much blood as I have.  Of course.  Typical for me.  I have to be the anomaly.  So, she decides to send me to the hematologist.  We met him last Thursday, and pretty much are just waiting to hear the results of more blood tests.  He also is getting copies of some of my old records to try to put together a picture of my anemia and what a baseline is for me.  So, he is getting blood tests from when I had gall bladder surgery, and maybe even from when I was pregnant with Sarah.  He doesn’t think trying to get records from Alaska from when I was 15 is really worth the trouble.  I wonder why?  So – just waiting to hear if the blood test show anything.  They took enough blood (like I have any to spare!) they should find something if it is there.  The phlebotomist told me that I had nearly every color tube that they use for blood collection.  An entire rainbow!  Lucky me.  She also commented that the tests they were running they hardly ever see.  Yep, that sounds right.  Tina, the medical freak.  One more bit of info – the hematologist said that some of the tests where he has to look at the blood under a microscope will be more difficult, since only about 1/3 of the blood will be mine.  Ew.  OK, so will these test do any good?   He seems to think he can sort through it, it will just be more difficult.  Well, that’s why he gets paid the big bucks, right?  I’ll keep you posted on what comes out of this.

Mostly, these infusions are much easier to tolerate.  I’m not drained physically, and I’m able to think more clearly.  I am getting those lovely joint aches.  Those are pretty bad.  Every joint in my body acts up.  Ankles, knees, hips, elbows, shoulders, fingers, wrists.  Only my toes have stayed out of the party.  Never fear, I have 7 more weeks, maybe by then, they will have joined in the fun.  Starting about Wednesday afternoon of each week, the aching starts.  Thursday and Friday are hellacious.  Saturday starts winding down so that by Monday I’m back to normal, ready to start the process all over again.  The neuropathy has happened only a couple of times for very short periods.  Once in my fingers and a couple of times in my toes.  Oh, that’s where the toes join in.  That’s good, wouldn’t want them to be left out!

I have not had to have another transfusion.  My oncologist and hematologist agree that I can let my hemoglobin get to about 7 before I need another one.  Last Monday, I was at 8.3, so I should have a couple more infusions before I need more blood.  Hopefully.   Heck, maybe I can get through the rest of the chemo without any more!

Well, a girl can dream.

Things Are Looking Up August 4, 2010

I’m cautiously optimistic.  Maybe I can survive this next 11 weeks!  I just had my first round of Taxol on Monday the 2nd of August, and today (Wednesday) I’m feeling pretty good.  Actually, I was feeling OK yesterday too.  Thank goodness!  I really don’t think I could keep plugging along if I had to go through too much more of what that AC cocktail did to me.

I can’t believe I haven’t posted in almost a month.  When my mind is clear, I think about what I am going to post, so I didn’t realize it had been so long.  Now, of course, I will forget every clever little comment I had come up with while lying in bed.  Seriously, chemo-brain is a real ailment.  I find myself forgetting names of people and things.  And exactly what I was doing at any given moment, or what I was GOING to do.  Like “Why did I log on to the internet?”  or “Why do I have this in my hand?” or “Why did I come in here?”  To be fair though, I used to do that last one all the time when I was a teen-ager working at Tastee-Freeze.  I’d walk into the back by the grill and say “Why did I come back here?”  They started calling that having a “Tina” moment.  So, apparently, going through puberty and going through chemo cause similar brain farts.  Who would’ve thought?  Maybe I should give my kids a break?

So, let me try to go over what has been happening for the last month. 

I finished my last round of the AC cocktail.  That stuff really sucks.  It was to the point that even thinking about going downtown was making me physically sick.  I still don’t like thinking about having to eat crushed ice.  I don’t think I will ever be able to do that again.  My brain associates that with chemo, and immediately I have the nauseous reaction.  The mind is a strange thing.  I’ve never felt such exhaustion.  I would go in on a Monday for chemo and I was out of it for a week solid.  Honestly, just thinking about getting out of bed would make me tired.  So, for the last two doses of the AC, I missed an entire week of work.  I would work from home for a couple of hours each day (from bed), but that was about it.  The week after the chemo, I still could only manage 5 or so hours a day, and then I was totally wiped out.  By Friday of that second week, I would start to feel better.  I would have a decent weekend, and then back to chemo on Monday.  I started to really question why I was doing this.  It is only going to reduce my chance of having a recurrence of cancer from 30% down to 15%.  In my low moments, I believed it really was not worth it to me to continue to do this to myself.  Of course, I know it is, but that is sure hard to get out of bed and go back to chemo when you know what it is going to do to you.  Those last two doses were really difficult for me.  The good news is – they are DONE!  And I survived!

The icky news is that after each dose I had to have a blood transfusion.  That’s right – I’ve had four transfusions now.  That is eight pints of blood I have taken in.  For those of you wondering, the average human body only has 10 pints.  (OK, so I’m a bit bigger than average, but work with me here!)  That means I’ve nearly replaced my entire blood supply with other people’s blood.  ICK.  ICK.  That is really creeping me out.  I don’t want any more of other people’s blood!  Here’s my plan – no more transfusions.  That should work, right?  So here’s the million dollar question.  WHY do I keep having to have these?  Not because of a low white blood cell count – that is actually through the roof, thanks to the Neulasta shots.  No, it is because my hemoglobin levels are hovering around 24%-25% and my hematocrit is around 7.9 to 8.9.  Again, those levels should be 36% and 11 on the low-end.  My nurse says I have Princess Marrow.  My oncologist (who has a background in hematology) would love to study my blood.  Thankfully, she is committed to getting me through chemotherapy first.  We will try to find out why I am so anemic another time.  They did some tests and know that I am not iron or any other vitamin deficient.  I am a medical anomaly.  I’m such a freak.

Let’s see, what else has been running through my mind?  Oh – here is one that might fall under the TMI category.  So skip this paragraph if you really just don’t want to know.  For the integrity of my blog, and in the interest of total disclosure of what this is like for me… here goes.  When my hair started to fall out, I went and got my head shaved.  You all know that.  What you don’t know is that next day I decided I was going to test the “total body hair loss” theory that I had been reading about.  So, yes, I tugged on the hair “down there” and sure enough, I came away with a fist full of curly hair.  Ugh.  So, I went ahead and shaved there too.  That’s it.  Just wanted to put that out there so everyone has the true picture of what happens.  No need to ever mention this again though.

My eyebrows have not fallen out all the way though.  They are thinning  which is a good thing – I could be a uni-brow if I didn’t have them waxed.  I haven’t had to have them waxed since this started, so I’m happy about that.  I also am happy that I have not had to draw on my eyebrows each morning.  Shoot – I’m lucky if I shower each morning.  I’m sure I would forget to draw them on. Or I would just be too tired or weak to do it.  How weird would that look?  I still have eyelashes too.  However, they are pretty thin and really short, but they are still there if I want to brave mascara.  Which I don’t.  Remember, I’m lucky to get through a shower.  I’m not too big on the makeup right now.  I finally shaved my stubble on my head.  That was really getting annoying.  It would stick to my hats and pull.  That hurt like crap.  One morning, when I was actually in the shower, I decided I would just go for it.  I didn’t cut myself either!  I didn’t do a great job, missing a couple of spots on the sides – but hey!  That’s not easy to do without a mirror.  Or without energy to keep your arms up for very long.  So, I’m mostly totally bald now.  I say mostly, because there is still a small amount of stubble that I can feel, but I don’t think that is coming off without a straight razor and I’m just not that brave.  Also, because I have some little red bumps from a reaction I got from using goats milk soap on my head.  Don’t ask.  Also, don’t use goats milk soap.  Just a suggestion, take it or leave it.  I won’t ever be using that particular product ever again, however.

Oh, so about the shower thing.  Really, without hair, what’s the big deal?  I wash my face, brush my teeth, put on some deodorant, and I’m ready to go.  Hopefully, I’m not offending anyone with body odor that I can’t smell.  Oh well, too bad if I am.  There has to be some perks to this crappy situation, right?  I shower every other day or so.  It’s really nice when I’m not feeling so great to just get up at the last-minute and get ready to leave in about 10 minutes tops.

One more thing about the hair issue.  My sister asked me if my arm hair has fallen out.  Good question. Answer?  Nope.  You know what, neither has my facial hair (you know, that lovely lip hair and fuzz on the side of my face?)  What’s up with that?  Shouldn’t total body hair loss include those?  Well, apparently, that is not fast growing hair, so I get to keep it.  Oh well.

I also have figured out that in order to keep the nausea at bay, I had to almost be constantly eating.  Perfect.  I’ll be the one person on chemo to gain weight.  I’m hoping that this can stop now that the AC is done.  I don’t think eating all day for the next 11 weeks will be good for my wardrobe choices.  Especially since the food that tastes good (or sounds good) is not good for me.  I’m certainly not eating rice cakes or celery when I’m feeling nauseous.  More like tortilla chips, or the occasional cookie.

So, now I just wait and see how the next 11 weeks go.  I understand that Taxol can give you muscle pain and neuropathy (tingling and numbness) in the fingers the more doses you have.  So this may be something in my future, but I’ll take that over what I’ve been through so far.  Brave words right?  I will have to remember those words when I’m complaining about the aching and numbness.  I’m sure I can count on my family to gently remind me not to complain.  It could be worse! 

I have had a lot of things go my way since getting the diagnosis.  Stage 1, no lymph node involvement, clear margins.  It could be a LOT worse.  I have a fantastic support network with my family and my friends.  Again – I can’t tell you all how much the comments mean to me.  I read them all and actually re-read them occasionally.  They make me cry and I feel so lucky to have such people in my life. 

It could be so much worse.

3 Down, 13 To Go. Ugh July 8, 2010

Well, chemo has certainly taken a bit more out of me than I was hoping.  You always think that you’re tough and can handle things.  I went through childbirth  twice!  Lived through a gall bladder attack – twice.  (And those hurt like hell, by the way)  Chemo is a whole new ball game.  It has just completely wiped me out, leaving me with no reserves.  I hate this feeling.

But – better suck it up, right?  I’ve got things I have to do.  I’ve had to have two blood transfusions now.  The really sucky thing was I was actually feeling really good before this last one.  I walked into the infusion room on Monday for my third round of chemo and the nurse said we had to talk.  Ooookaaaay.  What about?  My hat choice?  Really, it’s the only one that doesn’t hurt right now.  Well, no.  My levels are really low again.  Lower than they were the first time.  She asked how I was feeling, and I said that actually this is the best I’ve felt since this whole thing started.  Hmm.  I think she thought I should be in a wheelchair with zero energy, needing a computer to talk for me. 

Needless to say, I had to get another transfusion the next day, which is a lovely 5 hour ordeal.  By then, the round of chemo I had the day before was coursing through me at top Ms. Pacman speed, and I was again feeling like a wet rag.  Still am, actually.  I’ve spent the week trying to work, but figuring out that I really don’t have the energy for it.  Seriously, just sitting up sometimes is enough to break my head out in a sweat.

Speaking of head sweating.  Last week, I had to go to the emergency room for a fever.  I’m laying in bed Friday night, and I get the chills.  Hmmm.  This is something they told me to watch out for.  Better get the little instruction sheet they gave me.  Sure enough, if I get the chills and a temp that is above 100.6, I need to call the doctor.  Well, my temp is 100.4, so I decide to tough it out a little, no need to be an alarmist.  An hour later, it’s 101.4.  Shoot.  FINE!  I’ll call the on-call oncologist (since it’s about 11:30 PM now)  He calls me back, and after a lot of questions determines that I should come into the ER.  Perfect.  Dave has just taken a Benadryl and Mom is at another ER with a friend of ours.  No joke.  To make a long story much shorter, we get to the ER, and the triage nurse takes my temp with one of those  thermometers that they run across your forehead.  Perfectly normal.  OF COURSE!  I go back out to the waiting room and tell Dave that we should just go home.  I was working up the energy to leave when I get called back.  The ER nurse takes me to a room and gets my vitals.  Her forehead thermometer also says normal.  However, she decides that she will take my temp with an oral thermometer.  Yeah – 103.  I knew I felt like I had a fever.  Well, to try to make this short (again) they observed me, took some blood, gave me some fluid, gave me Tylenol and about 5 hours later, let me go home.  They have no idea what caused the fever.  Sounds about right for me.

So, now I’m waiting to start feeling better after this round so the 4th round of AC can kick my ass back down.  Hopefully, I’ll get to feeling better soon and can get some work done next week and have a weekend where I can spend some time with the family.  July 19th is the last of the AC cocktail.  Then I get two weeks to recover and on to the 12 weeks of Taxol.

I understand that the Taxol is better tolerated.  I shouldn’t have the nausea and maybe since it is only one drug, I won’t be quite so whipped.  Here’s hoping, right? =)

So for those just dying to see how the new do looks, here is my picture after getting shaved.  I’m waiting for the stubble to fall out, but this is how I’ll look for the foreseable future.

It’s Official – Chemo Sucks. June 22, 2010

OK – chemo itself is fine. Nice nurses, comfy bed, TV to watch.  It’s the side effects that really suck huge!  The day after chemo I go in to see the oncologist and get my shot of Neulasta (to help with my blood count).  I explain that I’m feeling pretty nauseous.  Dr. Rodler orders some fluids to be given  through an IV and gets a new prescription for me to see if that will help.  It didn’t.  I realize now that when they said to take the medication they gave me right away, they meant to take it as I was walking out of infusion.  Jeez!  I took it when I got home after I did a couple of things and had a chance to sit.  Big mistake.  Well, this time I will have the pills in my hand and I will take them before I get to the elevator!  Being nauseous really stinks.  After about three days, I finally got over that.  Then came the extreme light-headedness (is that a word?) and just feeling really weak.  That’s fun.  Wake up at 7:30-ish, decide I don’t have the energy and lay back down.  Get up at 9-ish, take a shower, lay back down.  Finally get dressed and get to work by the crack of 11.  Sheesh.  There were a couple of days that I really shouldn’t have bothered.  I was so light headed that really nothing stuck and I have no idea what I was able to accomplish.  I know some things got done, but not what should have gotten done.  I have to thank everything holy that I have an extremely understanding employer and they are working with me.  I will have a bank of time that I owe them at the end of this.

OH – wait.  I have a bit of good news.  I got the call from the genetic counselor and I am negative for both of the breast cancer genes!  Yea me!  No more surgery in my immediate future.  Thank God for big favors!

So today’s chemo went well.  I had my blood drawn first so they could test all my levels and check my iron.  I luckily had a good tech, and she was able to get the access into the port in one shot and all was good.  Next stop – infusion.  I check in at the desk and they give me my little pager like you get at a restaurant that is really busy.  I wonder, if I tip her, will I get a better infusion room? Hmm..  For now I just want to get the comfy chairs and wait.  The view of Lake Union is beautiful and watching the seaplanes land is fun.

I obviously should think about the tip thing.  People that got there after me were getting “seated” first.  What’s up with that?  Well, other than I was there 30 minutes before my scheduled time and they were probably on time.  That or they slipped a fiver.  I may never know.  I finally get the “buzz” and little light show on the pager and Jolene, Mom and I head back to Bay 27.  Dave opted to stay in the waiting room since the infusion bays aren’t that big and he has seen this show before.

The nurse asks me how much fluid I would like.  500 or 1000?  Blink. Blink.  I don’t know.  How much should I have?  She said it is up to me.  Do I feel like I have been drinking enough?  Water, yes.  Alcohol, no.  I opt for the 500, I’m already peeing every twenty minutes, I think I’m hydrated enough.  She asks me how I’m feeling.  Is “Like Crap” an option on that questionnaire?  More specifically, am I nauseous?  Not now.  Do I have bowel problems?  Not now, but that WAS fun!  I tell her I’m light headed and weak, probably because I’m anemic.  She asked how I know if I’m anemic.  Well, since I have been since I was 15, it’s a pretty good bet.  In fact, she informs me, my hematocrit is 23%.  My hemoglobin is 7.9.  For reference here, those numbers, if they were normal, would be more like 36%-44% and 11.5-15.  So, yes, I am anemic.  The nurse says they will probably want to give me a blood transfusion, or maybe an iron infusion.  She will check with Dr. Rodler.  Turns out, Dr. Rodler thinks that my levels are way too low and I need a transfusion.  Okie Dokie.  So now I have to get 2 units of blood tomorrow.  As Katie said when we explained what that is – creepy.  If it helps with the whole light-headedness, sign me up.  Can I get someone’s blood that has great stamina?  Maybe someone who doesn’t like chocolate as a main food group?  I know, long shot here.  If it makes me feel better, I will settle with that.

The actual chemo infusion went fine.  Johnny Walker Red first, then the Cytoxan.  We left at a little after 7.  Yikes, everyone is starving!  Including me.  That’s good.  We had to pick up Sarah from driving class (yes, I have a daughter that will be driving soon.  Since cancer WILL NOT  kill me, the universe has seen fit to take care of that through my kids).  Tacos for dinner, yum!  I’m still not nauseous.  Excellent.  The new medication must be working.  It better for $10 a pill!  I have 3 small pills, take one before chemo and then for two days after.  If it works, $30 is a good price to pay.  Hopefully, I won’t have to do that on the weekly sessions, but every other week, I will do that.  If it works.

I have decided that my hair is getting shaved off on Thursday.  After talking with the nurse, and her describing that it will feel like your head feels when you have had a pony tail in for a while and then take it out.  Some of you know what that feels like.  The rest will just have to imagine that my head will feel bruised all over.  I talked with Becky, my hairdresser, and she said that her other friend that is going through treatment right now (what is in the water?) waited until her hair started to fall out and it was so painful she almost couldn’t shave it.  Let’s not do that.  So, Thursday night, I will officially be bald.  Stay tuned, I’ll post pictures.  I have a couple of cute hats and headcovers, so we will just have to see how I look.  Not that it matters, there is no way I’m wearing a wig, so it’s either bald, or hat/headcovers.  I think the hats will win out.

So for now, I let the chemo do it’s thing.  Travel through my body and kill any random cancer cell that had the nerve to stick around.  I imagine it like PacMan.  No, Ms. PacMan, she was cooler.  Traveling through my blood maze eating all the cancer cells.  Womp Womp Womp Womp….