Update 62

December 29 – Okay, when is this miracle shot going to kick in?  Worse, I was eating lunch with Jen and all of a sudden I leaped up and started hopping around and I know she thought I had completely lost it!  My toes had cramped so badly on my right foot that they looked like claws (I do have long toes, I can actually use them to pick things up off the floor, so this is an accurate description! Aren’t you glad I told you that bit of trivia!).  Took some time for the cramp to ease off and they still feel like they could go again at any time.  Didn’t sleep well last night and woke this morning early because I could feel those cramps trying to get me.  HAD to nap this afternoon and I could feel my toes trying to spasm, they did a bit once and then I finally fell asleep. Freezing Frieda followed me around most of the day.  Even had to wear a hat inside the house as my little head was cold!  Whew, I am exhausted today.

December 30 – I forgot to mention something last time.  A friend of mine called to vent about the fact that it takes forever to get in to get a regular mammogram and to please write here in the journals to schedule a mammogram early!  Her doctor speeded up hers since he needed the results right away so she got in under “diagnostic” but they had told her it would be six to eight months to get in for a routine mammogram! 

Didn’t sleep well again!  Those dratted cramps and I got very hot!  Shall I call that persona Steamy Stella?  Maybe not, sounds kind of kinky doesn’t it!

January 2 – Realized last night that I spent the day painting the bathroom again!  What – is this some kind of new tradition?  Christmas Day Jen started the whole thing and now on New Year’s Day I am following in her footsteps!  Decided the first color was a bit dark and it needed a second coat anyway soooooooooooooooo……………

Obviously felt just fine yesterday.  I must say, though, that I have not noticed a great change in how I feel due to that shot.  I will find out tomorrow if it brought my red blood count up.  I sincerely hope so! Aside from the cost of the thing I really do not want to go to the hospital and have a blood transfusion!  Still a bit tired all through Friday. Had friends over for lunch on Saturday and felt fine

Hair seems to have stopped falling out in great numbers.  Still see a few on my pillow and when I shower they fall as I am drying my hair but no big masses in the drain.  It must be growing some because I have roots!  A mixed blessing for sure!  I am glad it is growing but since I can’t color it and it is so thin it is quite noticeable.  Glad I eased into the wigs!

I started eating a whole banana every day to increase my potassium and I haven’t had an actual cramp since.  They are there lurking, but so far are remaining lurkers!

Had to fix up a “nest” in the guest room for myself.  Getting a good night’s sleep is becoming harder and poor Harold needs his rest, too (he snores although he will tell you he doesn’t!), so as much as we love each other (at 3 a.m. when he is keeping me awake through the earplugs I don’t love him quite so much!) I have a haven to sneak off to so I can sleep uninterrupted. I mention this because it is so very important that both of us remain as healthy as possible. I did this the first time around, too, and we still love each other!  I only use my nest if I am really tired and have had some sleep problems as my real bed is much more comfortable and I like sleeping next to Harold!  So, don’t feel guilty if you need sleep and take the necessary steps to insure that you do whether you are the patient or the spouse or the caretaker. 

Light week for me.  Company today for lunch, tomorrow is Herceptin only and maybe the dreaded $$$ shot, Thursday the endriconologist (hopefully he lets me try the whole dose for the next round, keep your fingers crossed!) and then I am off until the following Tuesday when Round #3 begins. I am actually going to work!!!!!!!!!!!  

Do you know I need to dress carefully for my treatments?  Must provide access to the port and now access to the back of my arm, just in case, dress warm enough so I don’t freeze while getting my treatment (must be only me because I am usually the only one under blankets!) and still look decent in case I have errands to run.  I am thinking of making a shirt with Velcro flaps all over it so I can just unhook it so they have access to wherever they need to be! Probably just wear a camisole and a jacket of some sort.  This limits my choices as I like to dress up for my treatments.  Makes me feel better somehow.

Addition – Harold is putting in the reinforcement necessary for the “valleys” in the new roof so he can get his inspection and we can get on with the shingles.  Priced skylights the other day and “ouch” they are going to be more than anticipated.  Skylights themselves are not bad, it is the accessories that we are adding.  However, I MUST have Venetian blinds and they MUST be controlled electronically.  Really not an option.  I can just picture trying to adjust the blinds with a long pole and having it crash down on all my artwork! It is Florida and I will get lots of sun in the summer so I really need to be able to control the amount of light coming in.  And, I am not quite 5’2” tall so that vaulted ceiling and skylight on the roof are really way up there for me!  Sounds like I am trying to convince you I NEED all that doesn’t it!  Its okay…….Convincing Cora has worked her magic on Harold already!

Only odd thing right now is I think I am beginning to get that metallic taste in my mouth that I have heard about but not ever experienced.  It is not there all the time but it seems to be appearing more often.  I know that when I drink bottled water I notice it the most. Doesn’t seem to be stopping me from eating though!  Still using my Biotene toothpaste morning and night and the Biotene mouthwash before bed and so far no sign of mouth sores.  Could be I am just not prone to them but I feel if I am vigilant it is extra insurance against them.  You know I am not so keen on trusting to luck!  Ole’ Luckless Lucy has been with me forever!  Goes back to creating your own destiny and not trusting to luck.  Learned that a long time ago!

January 4 – Treatment yesterday not bad at all.  Just Herceptin.  No shot! Was only there about a half an hour.  Found out a couple of interesting things while I was there.  My blood count has to drop to 8 before I have to have a transfusion and I would definitely feel very tired and know something was different.  I did not have labs done, only when getting chemo so I won’t know until next week how far the shot brought up my red blood cells and if I need a shot then.  Also, that shot did not cost $7000.00!!!!!!!!!!!!!  I had to get an itemized print out for AFLAC and it listed the shot at a cost of $1880.00.  Not cheap by any means but nowhere near $7000.00!   Wonder where she got that?  I know that either Neulasta or Nupragin (maybe both) do cost that much. And, Herceptin can be given either weekly for a half an hour or every three weeks for an hour and a half so I would imagine when I finish chemo I will get switched to the three week intervals.

Leg/foot/toe cramps – increased to a whole banana per day and eight ounces of tonic water (for the quinine) per day and the magnesium and calcium supplements and have not had an episode.  Happy Holly did stretches this morning while still in bed and it felt wonderful!  Will double check with Dr, M next week (my monthly check-up with him) to be sure that is okay.

Today felt completely normal!  Artist Anne worked in the (tiny) studio all day until three then went out and became Greta Gardener.  Did heavy yard work – digging up the grass, then digging up and leveling the dirt, raking in the stones that are replacing the grass, moving the dirt in a wheelbarrow to the back to level the new courtyard areas and then spreading it out there.  Not bad, huh!  Also found out today that Nurse Martha wants to come with me to the Las Vegas convention this year.  That works out great as neither Harold nor either of my daughters was going this year and I didn’t want a roommate since I knew I would be tired and maybe bald!  Having a nurse to travel with works out nicely don’t you think!

Tomorrow is the endriconologist, must ask whether the Aranesp shot will affect my blood sugar reading (Jen came up with that one!).  Keep your fingers crossed he is either pleased with how the Amaryl is working or is willing to let me up the dose before we go to the insulin injections.  Really not so keen on that!  In the afternoon I get a massage and I so look forward to that.  I have changed my appointments to every three weeks instead of once month simply because it is so relaxing to my body and to my mind.   A little something just for me!

A poignant moment today.  I was reading (Chronicles of Narnia) outside after I had my lunch and read about a person who had faced great trials and then found great strength and a feeling of well being.  He looked around and noticed “The birds were singing.”  I may be getting a bit deep here but I was outside and it really hit home to me when I read that simple sentence, “The birds were singing.”  I felt such a surge of emotion, tears of joy came into my eyes and I had to squeeze my eyes shut just to contain the powerful emotion I was feeling.  Yes indeed, the birds were singing, the squirrels were playing, the sky was blue and I am alive and doing well!  No matter all the rest of what is going on.  I stood up, spread out my arms to the sun and twirled round and round!  I’m alive!  I have a wonderful life to live right along with treatments.

January 6 – Oooooooooooooooooo Happy Holly has been elevated to Ecstatic Ella! Yesterday I saw my endocrinologist and I do not have to inject the insulin before getting the steroid with the chemo!!!!!!!!!!!!!!!  Yea!  Yippee! Hurray! The Amaryl plus very careful eating (very few carbs that day) has done the trick!  I am to increase the Amaryl to a full dose (4 mg), watch it carefully, and if it drops my blood sugar to low to go back to the ½ dose.  Dr. D. has also increased my diabetes medication (Avandia) from ½ a 4 mg pill to ½ in the morning and the other half at night as that medication helps the insulin receptors receive the insulin better.  Will track that for the next three months to see if that is helping along with the Amaryl.  If it weren’t for the problem with the steroid he would consider me in full control of my diabetes!  Finally, a doctor who only tells me good things!  I did sign up for a class they are having on “Know Your Nutrition” to be given by a Registered Dietician and Certified Diabetes Educator.  Can’t have too much knowledge to fight this disease either!  Glad to see the doctor’s having these things right in their offices. 

You know, if I didn’t have all these various health problems I would be in great shape!  I certainly never feel ( well, maybe a bit after chemo!) like I am a person with health problems.  Just do not allow them to stop me from doing any of the things I like to do!  I know my limits and usually try to push past them just a bit!  Can’t help being competitive, even with myself!  Maybe this is a question for Therapist Debbie!!!!!!!!!!!

Had my massage in the afternoon, so relaxing after she digs around and releases any tight places.  Mellow Melody was in residence the rest of the day!

January 10 – What a roller coaster ride these past few days. Since Saturday I have been feeling steadily more down.  Weepy Wanda visited on and off all weekend.  It is just everything pressing down on me.  I canceled a trip in June, supposed to do a trade show in Nashville and those are very hard work, plus being in another state, plus being a bit “iffy” as to profit!  That would be a real bummer to do that and find it was just to break even!  And it means a long drive.  Dr. M. cannot give me an exact ending date for my chemo, I have other trips that will throw the schedule off and he is talking about a couple of extra ones, too.  Then there is the radiation.  Do not know when that will start because of not knowing the chemo schedule, only that is should be around the end of May and into June. I finally realized that I may not be physically able to do the trade show by then. Seems I am affected a little more with each chemo treatment and by then I will have had a lot!  It is all just plain too much to deal with so I canceled.

I saw Therapist Debbie Monday morning and by the end of our session she asked if I had told Dr. M any of what I told her (I was very, very, d own) and I said I had only been feeling this way for a short while and she said I should ask him about a mild anti-depressant. Well, didn’t that just set me off.  At first I was dead set against it and then the more she talked the more I could see that it might be a possibility but it made me sad just the same.  Then Monday night I was in the kitchen getting ready to cook dinner.  My leg was trying to cramp, I have a canker sore (not mouth sores) and I bit it twice, my hair was falling on the counter when I bent over to grab my calf, I didn’t want to go today and get another treatment and maybe that dreadful shot and I just started to cry and cry. 

I saw Dr. M. today, told him about what Debbie had said and he agreed to a certain extent.  He would like to see how I am doing in a month by myself.  Plus I had told him that I need my wits about me and he said there were some that would allow that but he wasn’t keen on giving me more drugs – me neither!  Weepy Wanda was trying her best to get me to cry but all she managed was very leaky eyes!  He noticed of course and told me he actually felt better about me when he sees me cry than when I am all up and cheerful. He said it is all very real what I am feeling and that it is very hard to deal with especially when I thought I was done with all of this when I finished up the last time and that I should be crying!  Anyway, I asked him for a prescription for a “cranial prosthesis” (wig!) and we both agreed that I would benefit from a new wig which of course would create a new personality!  I believe I need a blond one!  He agreed.  I wore Joan Jett today and dressed in all black and told him this was my defiant look as I didn’t want to be depressed and down.  He laughed and said he noticed!  We talked a bit more and he said he knew I would get through this and that he really felt I would be done with cancer.  I like to hear that but am not so confident anymore with this recurrence.  He also said that then I would be “Good” and then he said well, with you maybe not “Good” maybe he should change that to “Better!”  He is really great though. He knew how down I was and later on he came into the treatment room and acted like he was there for everyone but stood in front of me and……..juggled!!!!!!!!!!!!  First he did it with one ball and two wrapped rolls of bandages and then a nurse brought him two more balls  He is very good!  Then he made me catch all the colored balls as he finished.  Of course I was laughing!  He smiled and bowed and winked at me as he left! 

I am Complaining Clara and Feelingverysorryformyself Francine today!  I really did not want to be there at all as you know.  This was the first time I have gone in the morning and it is because of the diabetes control so I had to test my blood sugar while hooked up to chemo, eat my lunch and then take my sugar reading again two hours later.  Didn’t like having to do that either.  And, Lordy, I looked at the chemo needle today!  Should not have done that!  It is huge!  I about fainted right then and there!  The nurse told me it was about an inch long and is a 20 gauge needle so all the drugs can drip in easily.  I always get a shot of Lidocaine to numb the area before they insert that thing and now I know why!  Then when I was all done – was there from 9:00 until 2:00 today – and still hooked up to the IV I had to get another of those dreadful Aranesp shots!  I was at 11.2 with my red blood count and she said they really liked 12 but I could probably get by without it today and did she want me to ask the doctor?  Not really but I said yes, go ahead and ask.  Of course he said yes to the *%&^^* thing!  Let me tell you, that thing hurts from the time it goes in all the way until that needle comes out!  I am sure she heated the thing up before she gave it to me as it burned as well as hurt!  I really hope I am up enough next week so I do not have to get another one.  So, I got stuck today five times during chemo and three more times at home to check my blood sugar readings. I am such a poor baby!  I know I do not have it as bad as other people but I can say with certainty that when it is happening to you it is a matter of apples and oranges for the comparison!

Here are some facts from today’s list of questions. The shot of Aranesp should have no affect on my blood sugar according to the endocrinologist.  I asked why I am getting Taxol instead of Taxotere – just curious.  Dr. M. said that Taxotere is best when given in large does on a three week schedule but that Taxol is as good or better when given weekly and is easier on the body.  I will get another MUGA scan in the spring and that will determine if I can continue on with the Herceptin.  I asked about a nine week course of Herceptin as opposed to a fifty two week course and he said the studies are very promising but we will continue on with my 52 unless there are problems with my heart.

Herceptin is a monoclonal antibody that targets the Her2 protein – a protein that is involved in cellular growth and replication and overexpressed in roughly 30% of breast cancers. The binding of Herceptin to Her2 prevents or reduces replication of cancer cells.

Came home and went to bed for an hour.  Just felt the need to rest after all that.  Now it is one in the morning and I am wide awake.  This is from the Decadron I know.  Painted on a cabinet, wrote directions, wrote this entry, cleaned house and I am still good to go!  Don’t feel so depressed right now and Dr. M. said that is the Decadron at work and that when it wears off and you come down is when the depression sets in.  Also, the chemo drugs themselves can cause depression.  Oh yea.

By the way, the 4 mg of Amaryl taken in the morning as opposed to the 2 mg taken in the afternoon seems to be working just fine.  I was within normal limits all day!  Hurray!

Hair is really thin but I do not know where it is going!  Hardly any comes out in the shower, nothing to add to the bag ‘o hair in a long time now, but I seem to find it everywhere!  Especially the back.  You know how a newborn baby’s head looks in the back, all thin and patchy?  Well that is me.  Add the grey roots and I am quite the picture!

Passed our roof decking inspection, ordered the expensive skylights (dratted things ended up cost more than double what I had expected) and ordered all the shingles.  Did we get standard stock shingles?  Of course not, had to have the special order ones!  Lovely architectural, deep shadow ones that are good for fifty years and come with algae protection (we do live in humid Florida!)  Skylights will be here in about a week and the shingles in about three weeks.  Harold is starting to put in the “window buck” the wood that supports the actual windows so we can start installing them when he finishes that part and it is inspected. That will be wonderful!  It was exciting to get the roof decking done but the excitement has worn off so it is fun to look forward to something new!  All of it is progress though.

January 11 – Just thought I would end this update on a positive note.  I am just fine today, my normal happy self.  Probably the Decadron working but I don’t care.  I am a ball of energy!  Of course hardly slept last night, probably the Decadron again and I may need a nap later or go to bed early tonight, but right now all is well in my world!

Love to all,

Margot   a.k.a.  Perky Polly keeper of the Perky Twins, Mellow Melanie, Ecstatic Ella, Happy Holly, Luckless Lucy, Convincing Cora, Freezing Frieda, Steamy Stella, Artist Anne, Great Gardener, Complaining Clara, Feelingverysorryformyself Francine, Weepy Wanda.  Kerrie Kickass and Brenda Braveheart seem to be on vacation!

 
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