“Explotive” Breast Cancer

Usually I just say what is on my mind but this time for the pure sake of not wanting to offend someone, I am using the word expletive!  I have seen in other blogs as it being referred to FBC, well we know what that means.  Today, I am on the fence….just not really sure if I want or need to be politically correct.  But there are no two ways about it, I hate breast cancer and I hate chemotherapy.

Monday May 14, the day after Mother’s Day was Chemo #2.  I may have already mentioned this in my last posting.  I can say, it was a beautiful sunny morning.  I got up with the birds, not really hard to do as I left the french doors in the bedroom open just a bit so we would have wonderful fresh air through out the night.  Almost like camping!  So back to the birds, right under the bedroom are 2 nice little bird houses, each one houses a couple of families.  So on this glorious day, the beautiful little finches and their babies started their chirping and making a fuss just after 5am.  No, too early, shut the door and back under the blankets.

One of my dear friends picked me up and we headed over the hills to the chemo clinic, all three miles.  I remember talking about last summer when on some days I was walking and jogging up to three miles several mornings a week.  Wow, that seems like a life time ago, I hadn’t quit smoking at the time and remember how winded I would get and being very fair skinned, my face would be as red as a lobster straight out of the pot.  But those days of walking and jogging seemed to be the end of my back.  Now I am 30 pounds heavier and the thought out running out of the house if there was a fire, exhausts me.

We got to the clinic, my numbers were good, I felt a little more in control as I kind of knew what to expect.  This time I had the dexamethasone in my IV this time and have decided that this is the way to go.  Overall the drug makes you feel pretty bad but taking it orally for three days is yucky!  We were done and it was ok, trying hard to be the gal with the glass half full….2 down and 4 to go.

The one thing that I noticed more this time was an increase in my chronic low back pain and some more lower extremity neuropathy.  Wrote down on my little note pad to ask the doctor for some percocet as vicodin really is not doing the job.  Felt really tired but not sleepy, hate that.  Went into the bathroom to wash my face and I was grey.  Slept off and on through the night, make sure that I am getting enough fluids.  Belly felt cranky and still had increased pain.  Nausea did not become an issue again until Tuesday evening.  It was a beautiful day so I did go outside for about an hour, long sleeves and big floppy hat to protect me from the sun.

Slept a bit better Tuesday night but the diarrhea started earlier this time, last time it was on Friday afternoon and this time on Wednesday morning.  One sore in my mouth still remains from round one but the lidocaine does help.  Had my weekly psychologist appointment, that is truly something that gets me through life right now.  I can vent my frustrations in a very safe place.  Usually we go upstairs to his office but those days are over until treatment is over.  We will talk in the downstairs office.  His office has the worst parking lot that I think I have ever seen.  I drive a Ford F150 XLT, so it is a long truck and the amount of anxiety that it would cause me to park in his parking lot, I just cannot go there.  So I park about a block away.  This time that was the longest block I have ever walked.  Kept my eyes to the ground except when I almost got run over by some old man who obviously does not know that pedestrian have the right away in the freaking cross walks!

When I got back to my truck, I just sat there.  Not sure for how long but I was winded and exhausted.  Needed to take some time before I decided I was safe to drive.  Ok, here we go, my focal point was getting home.  I could not remember when, if ever I had been so damn tired.  I had wanted to stop at Fred Meyer to pick up a few things, but that was out of the question.  I have no idea where the rest of the day went yesterday.  I have no idea what I even ate for dinner, except mac and cheese which tasted like the best mac and cheese ever.

I was sure that today I would feel better, ha that is a joke,  Had to go to Fred Meyer to get a few tomato plants, getting them too much later in the season and we might not have any ripe ones until October.  No zigzagging, produce, meat, dairy and cosmetics and then over to the plants.  At one point I thought my bowels were going to erupt so I headed to the bathroom.  Cute little sign says “ladies room is closed” Seriously!!!! This store is huge with a poor layout and one 3 stall bathroom for women for the entire store.  Thankfully the gut simmered down and I headed back to the plants.  We grabbed a few plants and then headed to the cashier, I was at the end of my energy.  The floor looked comfortable, wondering if anyone would notice if I headed back to bedding and climbed onto a shelf or back to camping.  Sleeping bag sounded pretty comfy.

With help from husband we got back out to the truck and I climbed in.  Husband put the groceries and the precious tomato plants in the back.  I was not sure how I was going to drive.  From now on, no more driving on chemo week.  This is taking away my independence and making me old.  Came home, back into PJ’s and have been back in bed since noon.  I am hating this more and more each day.  The left breast continues to hurt, I guess if something new is growing in there the chemo should kill it.

 

Poison running through my veins

Somehow one would think that chemotherapy running through your bloodstream would make you feel different almost immediately, but for me it doesn’t.  Round 1, the first day I actually felt pretty good with the exception of an increase in my chronic back pain.  No nausea for the first time in 2 years.  Really for the first week, I was tired, had some diarrhea. It never really materialized  to the point of taking Immodium, so it was tolerable.

I think the worst part was the all of a sudden it hurt to drink Sprite, my entire mouth was extremely tender even though there weren’t any obvious “sores”.  That seemed to progress to hurting when I chewed anything.  Well, I will hang in there until I see the ARNP in a few days.  Warm salt water is supposed to help, but that would take energy to walk into the kitchen to get the salt.  Husband would have gladly gotten me the salt, but I didn’t ask.

Then it was the hair starting to come out, it was just a few strands at a time.  Never the less, it was falling out.  Early, it was falling out early.  Everything that I had read showed that mostly it falls out closer to round 3 and I am just 2 weeks into round 1.  Well that was disappointing at best, I was still just getting used to having my pixie.  It was chilly outside so I put on my jacket to go to the grocery store, when I got home and was going to hang up my jacket, it looked like a couple of long hair cats had a bit of a tuffle inside my hood.  This was unacceptable.

My friend came over and picked me up, we headed to Great Clips to get the shave.  Thankfully we were the only ones there, so we got to play a little, started off with a mohawk and then the full shave.  Pictures taken at the important clips. Then off to mexican food as my stomach was feeling ok and I had a need for melted cheese, comforting melted gooey cheese.  Of course, when I got home I had to hit the anti-nausea meds because of the comforting melted gooey cheese.

I was also grateful that the little chemo hats that I had ordered off of e-bay had arrived,  They are cut and soft, but I think that going to a web site that has a little more experience with the needs of a chemo patient is a better idea and a much better selection.  Plus there was a delay on one of the orders as the person who was making the hats e-mailed me and explained that there was going to be a delay because she had come down with bronchitis.  Although I appreciated her honesty, really? Wash your hands and put on a mask.  It really is not good business to tell a cancer patient that you are too sick to sew a hat that has 5 small seams.

The Nadir Day was here, it was May 3rd.  The Nadir Day is when your doctor expects your blood counts to be at their lowest.  My numbers were pretty low, but not unexpected.  And I did not need any shots to boost my blood count at this point.  But it was clear that I had no immunity.  No church on Mother’s Day and limiting my contact with anyone who even looks like they might sneeze within the next month, ok that is a bit over the top.  But I did use caution.

May 14th, time for Round 2.  My numbers were back up to a pretty good level.  It is amazing how fast the human body can repair itself.  I feel a bit more prepared this time, have everything I could possibly need in the house.  I have to say the lidocaine 2% takes a great deal of the pain out of the mouth.  I did get one sore inside my nostril and that was just plain icky.  Found a chair with a pretty view with a good friend who was kind enough to take me to chemo.  Let the poison flow.

 

The TaTa’s to keep or not to keep

That was the question of the month.  I am a woman who is very secure with my own sexuality so the breasts do not define me. My husband feels the same, my life is much more important than having pretty breasts. However this is a decision for every woman to make for herself and I think by herself.  Getting input from friends and family helps, reading articles, talking to your doctor and insurance companies to see what the best option is for you.  Most insurance companies do offer breast reconstruction benefits so if you are 25, not married and still look good in a bikini then having a mastectomy and followup reconstruction might be really good for your self-esteem.  Me, well the body is kinda dumpy, the girls are heading downward so it is a non-issue for me.  If at any point I need to have the mastectomy then I would opt for prosthesis and special bra’s.

The first meeting with my oncologist brought up this very issue.  He could tell that I was still on the fence about further surgery.  We decided to have the doctors talk and come up with a plan or recommendation.  The concern on my part was that the lump that had already been excised was right up next to the chest wall and the other two are pretty close to the chest wall.  I was concerned that if any of these nasty little cancer cells decided to imbed themselves in the chest wall there will be great concern for the cancer to metastasize.

So we left the oncologist office probably with more questions and still lost in the grand scheme of things.  I pondered and paced, what should I do, what is the right answer?  I am the type of person who does not like doing things twice, if it is done correctly the first time then it does not need to be revisited.  Think of spring, the yard is full of weeds and you go out and pull them, yard looks nice…..then 3 weeks later the weeds are back because you did not get to the root of the problem.  I always try to get the root in my everyday life.  Cancer has a big root, not something that you want to do half-ass.

I decided that I should make a call and speak directly to the radiologist.  The receptionist was very nice to me but was hesitant to put me through to the radiologist as she thought that she would get in trouble.  I asked her to ask him if he could just take a minute to talk to me.  I was on hold for less than a minute when the radiologist came on the phone. He remembered me because “our case was very complicated”.  I had my questions written down so I would not get side tracked or forget to ask something.  He was clear that he felt that the other two lumps were not cancer and that I should not need further surgery but would like to see me back in six months for a follow-up MRI.  My decision had been made, no further surgery at this time.  I feel confident that I made the right decision.

My next oncology appointment came and the doctor seemed pleased with my decision, so now we can move forward with a treatment plan.  Ok, here we go!

 

The Port

If you are going to get chemotherapy or have multiple procedures and/or hospitalizations then you might ask your oncologist if you can get a port.  It is an easy way for medical folks to give you fluids, medications, chemotherapy and any IV dyes, they can also draw blood from the port.  Having a line put in is not an easy thing, it is a major operation.  So you need a (in my case) a vascular surgeon referral, pre-op appointment at the hospital and arrange a ride home by a responsible person.

You will need to be NPO (nothing by mouth) after midnight the night before the procedure, arrive at the hospital 2 hours prior to the procedure, have the procedure (about an hour) and then wait until you are good and awake, they also need to take a chest x-ray before you leave to make sure that it is properly placed.  It does take quite a bit of time and energy but I think it is worth the trouble.

The Friday before I was supposed to get the port placed I had to go for another pre-op appointment at the hospital.  This time was much better, in and out in just about an hour.  I followed my instructions, NPO after midnight, wash with a special soap and be at the hospital 2 hours before surgery.  The bad part about all this, I was not the first or second surgery of the day and I just do not do well-being NPO for 13-15 hours.  I was down in pre-op, IV in, met with the anesthesiologist and the surgeon.  They hung some fluids and gave me a little bit of medicine as my back was hurting and then the problems began.

They hung an antibiotic and pepcid, about five minutes later I started getting some chest pain, I do not remember if there was any shortness of breath or anything else, just al of a sudden things around me were pretty busy.  Had an EKG and then it was determined that surgery was not gonna happen.  My heart sank, I needed my port so I could start chemo.  So they wheeled me up to the ER and for the next four hours I was there.  The ER doctor agreed with me that I had been NPO for just too long.

My poor husband during all of this was scared to death.  When we checked in at the hospital, they gave him a beeper and told him when it went off that he needed to go back to reception.  He had just left me in pre-op and was heading for some food when the beeper went off and he headed back to reception.  The surgeon explained to him the problem and sent him towards the ER.  By this time everyone involved was pretty stressed.

The next day I called to get this all rescheduled and let the surgeons office know that I was just NPO for a little too long and to please get me back on the schedule as soon as possible.  Easy, well not really.  On Friday April 13 I got the call that we would try all of this again on April 17.  The time of the procedure changed 3 times and finally I was going to be the second surgery of the day and needed to be at the hospital at 0915.

As before, NPO after midnight, shower with the special soap and get to the hospital.  Got there had the surgery and woke up in recovery.  Given that I have a rather complicated surgical history and even though I am a nurse……there are nurses out there that are sure that they know more about you than you do.  The surgeon had given written instructions of what post-op medications were to be given and it worked!  I was home just over 2 hours after I had gotten out of surgery.  Miracle, no vomiting, no dry heaves, no hallucinations and well controlled pain.  I wanted to hug the surgeon.  The only post op problem that I had was my oxygen saturation fell to 79%, but nothing that a little oxygen didn’t fix.

 

Been a tough couple of weeks

Although no one but me has read any of this, it has been a bit since I have been here.  I really should write more often because I cannot remember specific details right now.  Been busy though, if you have had to leave your job, take a leave of absence or taking family medical because of cancer then you know the amount of paperwork that is required.  I thought that there was supposed to be a paperwork reduction act out there somewhere, I sure can’t find it.

I have chronic back problems and was using my FMLA at work for reduced hours.  On Feb 24th my supervisor and director asked me to stop working.  In all fairness, I knew that I was not holding up my share of the workload and in consideration or my fellow workers, I agreed.  Febuary 26th was my last day of work.  It was a sad day for me, I loved my position and my work spouses, a decent paying job with better than average benefits. 

So up to the primary doctor to finish my FMLA paperwork, start my disability paperwork, start my long-term disability paperwork, finish our taxes.  Meet with lawyer to start disability, calls to long-term disability insurance carrier, get all doctors that are treating me all on the same page and then there comes COBRA. Arg, if the federal government has anything to do with it…….it is going to be a mess.  My benefits are to expire on April 30, it was today that I actually received something in the mail from them.  Luckily my benefits person at work had already sent me everything via email.  I had filled out the paperwork, written a big check ($703) and had to pay for express delivery so these folks can get everything that is needed by May 1.  But I have no doubt that when I need to fill a $300 prescription next week, my pharmacy will tell me that the claim is denied. I have braced myself for this.

Anyway the paperwork and running around and phone calls are just so overwhelming.  Brace yourself for this, annoying at best.  Take lots of deep breaths and hang in there.  Make sure you keep a record of what you did and who you talked to, just to be on the safe side.

 

The Purpose

Today is my first day of being a blogger.  That being said, my apologies to anyone I might irritate or otherwise offend as I am new at this.  My purpose is to tell my story, give ideas and support other women who are going through the process of being diagnosed with breast cancer. My name is Maggie, I am 54 years old, and a LPN. I will not tell you what city or state that I live in because I do not want you to be fearful or have mistrust in the wonderful  medical staff that is in your community.  To make myself perfectly clear I am not now or ever going to give you any sort of medical advise.  Medical advise needs to be tailored to your specific diagnoses by your medical team.  The only reason I am even letting you know that I am a nurse is because if all the problems can happen to an experienced nurse, I can only imagine what can go wrong with someone who has no knowledge of the process. So here we go!

In the first week of December 2012, I went down to my clinic and had my yearly mammogram.  I was diagnosed with fibrocystic breast disease back in 1984 so I have been following up with mammograms as recommended by my doctors over the years.  Every year I would get a little note from the radiologists saying everything was all good and see you next year, this year it was different.  A week had come and gone, really I had not even given it much thought as I never did find it to be a particularly painful procedure, uncomfortable yes.  So at 0930 on December 13th, I got the call.  Hi Maggie this is (the clinic) we found an area of suspicion in your left breast,  honestly all I heard during the rest of the conversation was blah blah blah.  I did however write down the day and time of when they wanted me back for a repeat mammogram and an ultra sound.  It was in 2 weeks, wow that is a long time to wait.  So there was that nagging little thought in the back of my mind all through Christmas.

On the day of the repeat mammogram, I arrived at the clinic and sat in the waiting room continuing to think that this is just a shadow or a little cyst.  A cute young technician came and got me and led me back to the room.  After she got my breast positioned, I think that her hand slipped as the compression slammed into my breast and actually grabbed a rib, she quickly rescued me from the grip of this monster and repositioned me.  Yes the area was still visible.  Off to ultrasound we went, the area was clearly defined on the screen.  The technician went and brought the radiologists back and he did more with the ultrasound.  When he was done I covered my now really sore breast and sat up.  He said that he did not think that it was anything but he felt that we should cover all the bases and get an MRI of both breasts.  I was carefully listening to  not only what he said but how he said it.  He sure sounded scripted to me.  My regular doctors office would need to get authorizations from my insurance for the MRI.  The radiologists had a shocked look on his face when I said that I would not be seeing my regular doctor for several weeks.  He then said that they would be faxing this over to him today.  At this point I started to get a bit concerned.

I waited for a few days and called my insurance company, they had not received a request for the MRI.  I called my doctors office and asked them to follow up on this.  Apparently the paperwork just ended up back in my chart, no one seemed to know that something needed to be done.  Again waited a few days and called my insurance company and again they had not received the request.  So I called the doctor back and they had faxed it so now it is floating out there in air, they faxed it again and it was finally approved.  So at this point one would think that everything was a set, hmmm not so quick.  They were booked and so we had to wait another week.   By this point I was already getting irritated.  (point: if you need follow up and you do not hear back within a week, be proactive and call them).

The breast MRI is weird, I have had many MRI’s and CT scans over the years, but here is what to expect in a closed MRI.  First they will put an IV in so they can inject the contrast later in the procedure. You will lie on your back with headphones on, usually some music to your liking and you will have the first part of the MRI. Then they pull you out and bring in a female to help get you positioned for the next part.  Then you will be positioned laying face down with this coiled contraption that is encasing your breasts, then back into the machine you go and at some point the injection is given to you remotely.  One nice thing about this clinic, most of the time you will know the results before you leave the clinic.  The tech came in and helped me off of the table and took out my IV, at this point the radiologists came in to talk.  “Maggie, the MRI shows that you have two lumps”, my heart sank.  By this point I was pretty tired of the delays and things just not progressing as I felt that they should be so I went to see my trusted surgeon.  He is a very well respected surgeon in the area and delays and mistakes simply do not happen when he is involved.

Surgeon seemed surprised to see me and said “you just cant seem to stay away”.  So I told him the whole story and how afraid I was to have any biopsies done because of all the horror stories out there on the internet.  I wanted to be asleep and have him perform the biopsies, but as usual I was not going to get my way!  Going backwards a bit, I just do not get it…….why in the world would any woman write and post these horror stories on the web.  I am a nurse and I was completely terrified by these obvious tall tales, I dont think I slept more than a couple of hours a night for almost a month.  I was waking up in panic attacks and hyperventilating.  All I have to say to those that post this crap is “shame on you”!

My surgeon called my radiologists and they came up with a plan. One MRI guided biopsy and one ultra sound guided biopsy.  There was another delay because the clinic needed to bring in a technician that would be with me during both procedures.  More waiting and more frustration.  I was mad because if either of these were cancer……..I want them out!  January 31st came, I premedicated with xanax so my husband and I took a cab to the clinic.  This begins the day from hell.

The tech that was assigned to be with me for the two procedures was very nice and very skilled, she also knew that I was scared to death.  The first biopsy was the MRI guided.  Another IV was placed and I was positioned up on the table in those coiled contraptions, into the MRI I went.  After the views were taken a radiologists came in to the room and I came out of the MRI, I had to lie perfectly still.  I felt the needle prick my skin with the Lidocaine (numbing medication) it does sting quite a bit.  He then advanced the needle towards the lump using the Lidocaine as he went, he told he to tell him if I needed more and I did a couple of times.  Then back into the MRI to check for placement of the needle (they need to verify that they are in the right area), then back out to reposition, then back in to verify and then back out to take the sample.  If you ever have played the game PacMan, it feels like there was something munching on my breast……….not really painful because of the Lidocaine but more a creepy feeling.  He was done in just a few minutes then off the table.  They had put the instruments away because I am said that I did not want to see them.  So that was done, if I ever have to do this again, I would do it without the xanax so that way I would not have to pay the taxi $35.00.

Then I got a little break and sat in the waiting room with my husband and had some soup and crackers.  Then we were ready for the ultrasound guided biopsy.  It was pretty much the same thing but instead being on my back with pillows and not in a machine. The skin prick, the stinging and the munching but this time they were also using vacuum assist to get as much of it as possible.  In both biopsies they place a tiny maker so that way in further studies they will know that particular lump has already been biopsied.  The final procedure of the day was coming, a light compression mammogram to verify clip placement and then I was to get to go home.  The tech left the room and came back a few minutes later and said that the radiologists wants to talk to me.  Somehow the original lump from back in the beginning of December was still there and it had not been biopsied.  The apologies were plentiful, they did not know how the MRI’s missed that lump.  The only way to get to that particular lump was by stereotactic biopsy.  A stereotactic biopsy should always be first as you are in about 50% compression with mammogram for about 40 minutes.  They were worried about bleeding and injury to breast tissue since I already had the other biopsies.  I was very specific that if they wanted it, then it would have to be that day..I was not coming back.

Actually I do not remember most of that procedure as I was so stressed out.  I remember being face down on a table with my left breast hanging down through a hole in the table.  I felt more like a cow than a human and also felt that there has got to be a better way.  If men had to have this procedure done on a frequent basis,  I am sure that they would find a better way.  So we got through that and had another mammogram again to check to clip placement and I was free to go.  I had been there for almost 9 hours, we were the last to leave and even most of the staff was gone for the day.  One of my dear friends came by to see how I was doing and she stuck around to take us back home.  Thank you dear friend!  I had a marathon that day and I take prescription pain medication for a chronic condition.  When I read the post procedure instructions it said to take Tylenol for any discomfort.  That is a bunch of crap! If I had not had my prescription at home then I would have ended up in the emergency room.  My breast turned every color of black and blue and red and purple and the bruising did not completely resolve for 6 weeks.  If you are going to have more than one biopsy in a day I strongly suggest that you ask your doctor for a little pain medication for the first 48-72 hours,

My surgeon wanted to see me back 4-5 business days after the procedure and I explained to him what had happened and why now there are 3 reports.  He said that I was fine, these are fibroid and my chance of getting cancer does not increase because of theses fibroid.  (fibroid almost never become cancerous).  He patted me on the back and sent me down the road.  When I  left there I felt that the whole story was not done and I felt that there was something wrong.  I thought about it for a few days and then printed out a clip from the Mayo Clinic website where it said that if a radiologists uses the terminology “suggestive for carcinoma” then pathology should be set aside and further investigation is warranted. I attached that article to a little note and delivered it to his office on Valentines Day.  All I asked for was for him to have a conversation with the radiologists, just to be sure.  He did and then I was called by his nurse and was told that I have another appointment with him.  He scheduled me for an excisional biopsy (that is a lumpectomy and takes a portion of all surrounding tissue but you do not go home with drains in place) for the following Wednesday.

Now the games begin. First I have to go the radiologists and have what is called wire localization done and then go to the hospital for an 11am surgery time.  Well that morning it was snowing like crazy and another really good friend came and took me to get that done.  She is also a nurse and thought that this was just crazy!  So we get to the radiologists, have the mammogram and then into a very similar contraption to the stereotactic machine except this time I am sitting in a chair.  So I am in position and the radiologists starts numbing the area so he can thread a guide wire down to the lump to make it easier for the surgeon to find the lump.  Suddenly he stopped, he RAN OUT OF WIRE!  seriously how does that even happen! So he had to start over and go from a different direction.  My friend that was with me said later that he was standing out of my eyeshot and was pretend banging his head on the wall.  So this all got done about 1025 and we had 10 miles to travel in the snow and traffic, but we made it.  I must say however that my pre-op was a bit rushed.

So surgery was over, almost 5 hours later still in recovery because of vomiting and pain.  My friend who had met me at the clinic back in January came and sat with me.  Other people vomiting does not bother her in the least and I was retching up some pretty nasty green bile.  She said that it was amazing that once the staff at the hospital stopped doing what they were doing and let me tell them what works, things got better very quickly.  I am had about a dozen major surgeries over the years, so I know what does and does not work.  My surgeon really thought that this was an unnecessay surgery and did not take any lymph nodes.  I went to his office the following Monday and he confirmed that I do have invasive ductal carcinoma.  So to all that read this little bizarre story, please tell every woman that you love and even every woman that you hate………do not settle for answers that do not make sense to you.  Push the medical community for answers.  Had I not pushed and annoyed many of the local medical professionals my outcome would be very different.  Right now I have Stage 1 a small well behaved cancer, if this had just been set aside and nothing further done after the initial biopsy by next December we would be looking at either a stage 3 or 4 and my prognosis would be much different.  My staging was completed yesterday I am T2, N0, M0.  We can only assume that there is no lymph node involvement because no nodes were taken and I do not think that knowing that little bit of information would make a difference in my treatment.  My oncologist was happy to hear that I made the decision to not have a mastectomy after I spoke just one more time with the radiologists.

I will continue to blog through out my treatment.  Just getting things written down sometimes helps to clear the mind.  I would be happy to answer any questions and happy to see your comments.

 

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