Update 77

August 1 – I had a friend ask if I had heard of Inflammatory Breast Cancer and decided to put the answer here for everyone to read.  Yes, I have heard of it and it seems to be making a lot of headlines right now.  You know how my recurrence in the chest wall after a mastectomy placed me in the Five Percent Club because it is so rare? Inflammatory Breast Cancer only happens in the One to Four Percent Club so it is even rarer than mine.  It does not have a lump involved, the cancer forms in nests and sheets and there are visible changes to the affected breast.  It occurs when breast cancer cells block the lymph vessels in the skin of the breast. I spent the morning on the Internet looking up info and the best I found was on the Susan G. Komen website.  Go to www.komen.org and click on the ABC’s of Breast Cancer up along the top bar and it has photos that show what Inflammatory Breast Cancer looks like. It is a very aggressive form of breast cancer and hard to detect so it is imperative that every person (it affects men, too!) out there knows just exactly how their breasts look and feel and if they notice any difference to get to the doctor right away and insist on being tested for Inflammatory Breast Cancer. Here are some other web sites you might like to check out, too. www.ibcresearch.org and www.cancer.gov

August 3 – Well, finally the doctor’s office called and they are taking my cough seriously!  I have a chest X-ray tomorrow.  I am so annoyed that it has taken this long to get them to do something.  Tomorrow makes a month that I have had this cough!  You can bet I will be saying something when I see them in the office.

Guess what?  I have a hair appointment next week!!!!!!!!!!!!!!!!!!!  For Real Hair Silver Fox Serena!  I have no idea what Mary can possibly do with it but I want it to look more like I meant for it to be so short and not like it is growing out from chemo treatments!  Some of it is two inches long, some is only a half inch long, some areas are thick, some are still thinner, so it just looks scraggly.  My hairdresser is great fun so I will be taking all the “girls” along so she can meet them!

Napless Nellie for two days now!  Tired at night but that is just fine.

That Evil Leg and Foot Cramp Lucinda Faye has been plaguing me again! She is back to the guerilla warfare where she sneaks in and zaps my calf muscles just enough to wake me right up!  If I get up and walk around for a bit I am usually okay.  Back to eating a ton of bananas (beginning to dislike them!), stretching exercises, quinine water and Leg Cramp pills.  I really despise Lucinda Faye!  Oncologist said I could continue to have problems with the cramps for months!  Oh yea. I sure hope the Taxol worked on any stray cancer cells, it sure worked on my leg muscles!

August 7 – Well, I had a chest X-ray on Friday for the cough and should be hearing the results today.  Keep your fingers crossed that it is nothing serious.  I have had enough of “serious” for awhile!

Today is a month exactly since I finished radiation. Hope I never have to do that again!  I did not like radiation at all.

Spent most of Saturday in my recliner.  I truly don’t know if the tiredness is from the radiation or the coughing!  Was fine on Sunday, worked outside for a long while and no nap!

Herceptin treatment tomorrow.  Seems like I just did this instead of it being three weeks ago!  Hopefully only about four more of these and I am done for real!  The rest of these treatments are all falling on the day after I return from a teaching trip.  Oh yea. However, I am going to be off on teaching trips now aren’t I!!!!!!!!!!!! I certainly feel well enough to travel and teach (once I ditch this cough!) so do not expect any problems there.

Thank heavens I see my hairdresser on Thursday!  I now have a “baby” hairstyle! I let it dry naturally the other day and OH MY!  Picture this.  A darling little baby with really fine hair that flips up all around the bottom and up over the ears and then all the rest of the hair comes up and forms a point right on the top of their darling little head.  So cute.  Good place to tie a little bow.  Now……………..picture that same hairstyle on a fifty-eight year old woman with silver and steel colored hair.  Not nearly so darling!  Couldn’t even paste it down with gel!  Looked a bit like a mad scientist!  I cannot imagine what she will be able to do with this stuff!  Last time it came back in curly for a while and it was just fine.  But this stuff is weird.  Maybe since I didn’t lose all of it, just got patchy and thin and bald only in some places, the hair gets a different message once chemo is over.  Something is sure different!

August 11 – Where do I begin? Before I got my Herceptin treatment on Tuesday I stopped in the other end of the building to let the radiation oncologist’s office know I was in the building and would be stopping by after treatment to see if they had the results of the chest X-ray.  I heard the receptionist call the infamous V (nurse who takes forever to return my calls and gives me half answers) to tell her.  Went on over for my Herceptin treatment.  For the first time ever I was the only person receiving treatment in the whole room!  It was eerie, like maybe the cancer rate was down but the nurse told me that a lot of people had cancelled that morning.  I can tell you I really don’t want to be there but I can’t imagine canceling unless it was a dire emergency.  Not after going through all that comes before treatment and considering what the treatment is for!!!!!!!!!!!!!!  It was nice as the nurses had time to chat and usually they are running at high speed to keep up with everyone.  Chance would have it that my regular oncologist walked through and I snagged him and told him I was very disappointed in my follow up care from the radiation oncologist.  They are friends so I was careful in my criticism, not an attack but definite criticism.  He has known me now for three years so knows I am not usually a complainer.  He actually told me more right then than the other office has in five weeks – I could have that cough linger for three months!  He also went on to tell me that the other office was understaffed and that a call about a cough was not critical.  I said I was sorry but understaffed or not, how long did it take to return a phone call and say, “The cough was normal and could last for three months, call if it gets worse”  instead of putting me off for five weeks!  He did agree that it could have been handled better.  I was coughing up a storm so he heard me for himself and I told him I was hoping to get the results of the chest X-ray after I was done with my treatment.  He was concerned that the radiation oncologist would prescribe a steroid if they found anything and he didn’t want to take steroids, I said, “Me neither!” and off he went.  I finish up my treatment (old hat by now, no surprises there) and off I go next door.  I expect to be told they do not have the results and someone will call me (yeah right) and lo and behold I am ushered into the doctor’s office and the infamous V has her arm around me asking how I am!!!!!!!!!!!!!!!!!!  What is this!  I wondered if Dr. M had called over there or if they knew I was physically in the building.  Whatever it was, it worked!  The results were back and he said that looking at the X-ray, if you didn’t know me and what I had been through, it looked as if I had a lung infection but he knew it was “changes due to radiation.”  He couched his words carefully – never used the word damage, just changes.  I don’t know if he expected me to be surprised at his revelation but I said that I knew something was wrong after coughing for a month which was why I kept calling.  He passed right on over that comment but I know he heard me!  Anyway, it may not be permanent and he is not calling it radiation pneumonitis (a form of pneumonia) because I do not have any of the other symptoms – fever, chills, flu-like symptoms – just the cough.  So we are calling it “a cough due to changes in the lung due to radiation.”  I was relieved that we were at least calling it something!!!!!!!!!!!!!  Then he says he is going to put me on a low dose steroid and I tell him Dr. M just told me he didn’t want me on steroids. So he says he is going over to talk to him and be right back.  Is this a major change from being ignored or what????????????  He comes back and had missed Dr. M by five minutes so he said he would get with him and definitely call me that afternoon.  I was not going to hold my breath on that one but he did call me back and Dr. M did agree to a small regimen of MethylPREDNISolone 4 mg where you take a total of 21 pills over a six day period starting out with 6, then 5, then 4 etc until the last day you only take one. The problem with me is that I am also diabetic and any steroid plays havoc with your blood sugar. So I have been poking myself every time I turn around because of course there is another drug I can take if my blood sugar gets too high but the downside is that the same drug can drop it too low!!!!!!!!!!!!!!  Yikes!!!!!!!!!!!!!!!!!!  I can handle it for a week though.  Dr. D told me it could take up to two weeks for the medication to work but I must say I am better already!  Even the first day I was better so maybe Tuesday was my worst day and I was starting to get better on my own, who knows.  I am still coughing but nothing like I have been.  I never could get an answer from anyone on just what the “changes” to my lung are – is it burned?  Shriveled up from the radiation?  Sloughing off dead skin?  Just inflamed?  I mean, logically if my skin on the outside is burned and the radiation was going all the way through my body enough to damage my bones for life there had to be major burning going on in there. I have spoken to other radiation patients and it seems we are not to be trusted to know what actually happened inside our bodies!  I can tell you all about chemo but not much about radiation even after having gone through it.  It is all very mysterious.  Granted, it doesn’t hurt to be radiated except for the dreadful burned skin, but that goes away fairly quickly once you are done, and it is very inconvenient to have to go every day which is minor in the grand scheme of things but it is what is actually happening on the inside of my body that concerns me.  It is just as damaging as chemo but people are more afraid of chemo than they are of radiation and after experiencing them both I am not sure which one I think is worse.  I also have some more statistics for you.  Me and my clubs!  I came across this info while I was researching radiation pneumonitis on the web – “If therapy includes Taxol (I got Taxol with my chemo this time, the cause of my visits from good ole’ Lucinda Faye) the radiation can be especially damaging to the lungs.  In one study, those who took Taxol had a 14.6% chance of developing pneumonitis compare with 1.1% among those not using the drug.”  Geez.  Would I have changed anything had I know this beforehand?  No, I truly would not have as I am in agreement with all my doctors to treat this recurrence very aggressively but I would have been even more persistent in getting treatment for the cough because I would have known of the dangers.  Now you know so you can be armed if that should happen to you or someone you know.  I am not giving out medial advice here but advocating patient awareness!  I should have researched radiation a lot more than I did beforehand so I would have been aware.  My fault. Won’t happen again.

Now for a zinger.  The infamous V nurse also called me to tell me that she had called in my prescription and to let me know basically the same things the doctor told me when he called but also to tell me how much the people at my pharmacy liked me (I guess she figured I wouldn’t know that on my own) and I joked that I made them fudge every once in awhile and she told me and I swear she said this straight out, “Well, if you want to keep your nurse happy…………,” implying of course that fudge would do it.  I about choked!  So, I pulled one of her tricks and brushed right over the top of that with a question.  Oh please………………that woman could starve to death before I would even think about bringing her fudge!  The goodies I bring to people are to thank them for superior care or just plain being nice all the time but apparently she sees nothing odd in her nursing style!  Well, I do and she gets no fudge from me!

Got my hair cut yesterday.  Well, some of it.  My hairdresser said a lot of it was still shorter than the hair she actually cut!  She basically evened it out as best she could and with some styling stuff in it I look okay.  She said it was like a husky dog’s coat.  Some long, thin hairs and then a denser under layer.  Said some of the hair felt like the ends of a bad perm!  And she made a comment about my swirl of hair going round and round right at the crown.  That is where some of the really short hair is located so it will still be a while before she can give me any kind of style but I will begin to go without my wigs more now that it looks  like I actually meant to wear my hair this short!  I took all of the girls with me of course, and wore Fiery Fiona in to the shop. Mary is the one who confiscated Romantic Rose from my last hair loss and she laughed and said, “I take one away from you and it gets replaced by six more!”  She was proud that I did not have any curly permed ones in my new group and was very relieved to hear that even if I had kept Rose I would not have worn her this time as she was too out of fashion!  She didn’t charge me for my haircut since it was my first one from chemo (she did the same thing last time) and we did a lot of hugging!  She has done my hair for fifteen years off and on and I met her when she was twenty and came in to take classes with me!  So, Real Hair Silver Fox Serena will be much more of a presence now!

August 13 – Well, it is four o’clock in the morning and here I am at the computer.  For some reason that Evil Leg and Foot Cramp Lucinda Faye is on a roll tonight!  Been in and out of bed for the last two hours and finally gave up and just got up!  No idea why she is so annoying tonight!  Aside from this little problem I feel great!  Cough is lessening every day and they had told me two weeks to see results!  Voice is a bit raspy but that is it! 

Yesterday I spent most of the day outside as Greta Gardener doing heavy yard work!  Dragging around bags of mulch, trimming overgrown foliage, mowing the lawn, sweeping the street (yes, I sweep the street in front of my house when I do the sidewalks.  I am a Virgo and a bit on the Obsessive/Compulsive side! This used to be the bane of my daughters existence as I made them do it when they lived at home.  They are very glad to be adults!) and I filled up four trash cans with debris.   Still have some clean-up to do today and need to repot a few plants and clean out my greenhouse.  Oh my, aren’t my gardens and yard looking nice!  No brag, just fact!  I do love to be outside!  It was very hot but the humidity was down and there was a breeze so it felt wonderful.  It felt especially wonderful to be able to be out there doing it!  Gardening is like life – always something to do and constantly changing.  I do love to take a break and just enjoy looking at what I have accomplished. And, I did it during chemo and radiation and regular work and travel teaching!  I don’t ever want my cancer to return but if it does I know I can still have a full life.  Lordy, isn’t Pollyanna sitting here with me right now!

Harold finally had a Saturday off so he was finishing up the framing and we even had someone come out to give us an estimate on doing the exterior stucco work.  Today Harold will finish up the low voltage wiring so hopefully we will be calling in two inspections for Monday!  Hurray.  I will be calling around Monday to see about insulation.  Harold still has to finish the soffits before either stucco or insulation (do not want any creatures deciding to make a home in my new insulation!) so we are not quite ready for either of them but we are moving right along!

Washed my hair yesterday and plopped in all the new styling gook I got the other day and I achieved some semblance of what Mary created on Thursday!  Hurray!  Going to have to use Mega Hair Spray on the whirling flying saucer area on the back of my head at the crown area though!  That hair wants to lay right back down in its swirl pattern!  Wouldn’t be so bad if the back of my head wasn’t so flat!  Looks like I have a wreath of hair instead of a hair style when it does that!

See there, I am just rambling on because I feel so great!  How nice to say that!  I leave in a little over a week to teach at a convention on then on to visit family and friends and feel that I will do just fine.  I will be sure to rest but, I still have days when I am tired, but every day is an improvement.  Chemo ended four months ago and radiation ended a month ago.  I am very pleased that I feel as well as I do.  The Herceptin makes me a bit tired and then I am taking all those steroids but even with that I really do feel good.  If that Evil Lucinda Faye would just take the hint that she is not welcome and leave, life would be wonderful! 

Photo of the Week – Classy Clarice!  She is the only blond one this time.  She is exactly the same wig as Fiery Fiona but looks different, at least to me.  Not sure if the difference in color makes the hairs different but it doesn’t even style the same as Fiona.  I like her though and wear Clarice when I wear beige.  She would be nice with pastels but I look dreadful in pastels so beige is about as pastel as I get!

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