The pain has started!!

July 11, 2017 Tuesday

Last night in the shower, the pain started!!  As I just stood still in the shower, my feet started to hurt and the pain quickly got pretty bad.  By the end of the shower, my feet and my hands were both hurting.  I didn’t like it at all, but it didn’t last all night.  I did take an aleve pm again, I really like my sleep, and I did eat more watermelon before bed so I did get up several times during the night, but I quickly went back to sleep!!  When I got up in the morning, I could tell that I was no longer bloated by what was probably chemo fluid – I felt much lighter !!  And I weighed 3 pounds less.  I don’t like being bloated!!  Don’t suppose anyone likes it!!

So overall, I had a good night and felt right as rain this morning.  I fixed my breakfast and then went to visit with the quilt lady friends and had a nice morning with them.  I got to see several beautiful quilts plus my latest one is on its way to getting quilted.  Our little group then went to the new house of one of the ladies, I don’t feel really good putting many names in here in case you haven’t noticed, and I love, love, love her house.  It’s beautiful.  She also made us a great lunch of chili, cheese, chips, cookies, bread and watermelon.  It was a wonderful time.  I left before the others because I had a pool to get to.

The pool was glorious – the water was beautiful and cool but warm enough for me to walk into and the sun was magnificent.  I was a little later than the others, but I may have been in the pool for two hours!!  TWO HOURS!!!  I did wear a hat most of the time and I did wear sunscreen but my face feels like it may have gotten a little too much sun.  I doubt I’ll be able to go to the pool this weekend, but maybe next week.  I hope!!  As we exercised, and I use that term loosely for me although I think I did move constantly for the time I was in the pool, we were able to observe the dating rituals of teen boys and girls and how the groups behave within themselves and with each other.  Things have really not changed much in the decades since I was a part of that.

After the pool, I spent the rest of the afternoon relaxing and reading and feeling just fine.  I am not drinking as much liquid as I would like – I used to drink lots of pink and yellow lemonade but now that stuff tastes terrible.  Maybe I should make a new batch and try that.  I did drink a gatorade today but that wasn’t really very much. After supper, I cut up a new watermelon for my favorite snack but it looked terrible.  I got a little red from the very center, but not much.  That was a waste of money.  Suppose I’ll get a cut up one tomorrow – that way I’ll at least know it’s red.

It was a nice day and I’m wondering if this is how the process will go??  Have some kind of reaction for a few hours and then it goes away?  Later, have another reaction of some type that lasts a few hours and then it goes away??  I can certainly live with that.  I know that as the treatments continue, the reactions will get longer lasting and more severe.  I just hope it doesn’t get too bad.  It seems everyone I have asked about the number of treatments, has had six treatments but I am only scheduled for four.  I wonder why the change.  Maybe I’ll ask Thursday when I go for lab work.

Morning weight – 216.

Today, it started.

July 10, 2017 Monday

Last night, I ate watermelon right before I went to bed.  I have this notion that all that liquid must be pretty good to flush out kidneys so I sometimes eat a good bit of watermelon.  Also, it tastes good!!  I did take an Aleve pm because I did want to be able to sleep after not sleeping well for several nights.  During the night, I did wake up several times and had to get to the bathroom, but I was able to easily get right back to sleep.  So it was actually a nice night.

I felt good when I got up and got ready to go to Ringgold for my sewing group, Dudettes.  While I was sewing with the girls, I did get the backing made for one quilt, the Thimbleberries one!!  Tomorrow it will get turned into the quilter and will be on the way to getting finished.  After finishing that backing I decided not to attempt the other backing I had planned to do.  I was feeling a little “funny” and decided not to push it.  We went to lunch and I had a very good grilled ham and cheese sandwich – they have such good ones there.  My stomach got a little funny feeling so I left early from Dudettes and went on home.

On the way home, I felt a sensation like something inside my veins – wiggles or ants or something.  Mostly, the sensation was in my scalp and my face but it has spread to my legs by now.  I spent the afternoon mostly relaxing and watching a little television. No naps, just nice relaxation time.

I have not yet felt bad, but this is definitely a very different feeling so I guess I now have evidence that the doctors did give me the chemo drugs (I really knew they had!) and that things are now starting to work toward getting rid of the cancer.  I’m all in favor of getting rid of the disease but I must say it’s sort of scary to actually face changes in my body.  I do realize how very, very lucky I am that we caught this as early as we did and that I have such good medical assistance in fighting it.

Tomorrow I plan to meet with the quilt lady friends who will be leaving and picking up quilts – I love to see all the beautiful creations.  Then I hope to have lunch at the new house of one of the ladies!!  I love to look at the insides of houses and see how they are decorated.  Then, if I still feel decent, I get to go to the pool again!!  I will be careful and use a waterproof bandaid, sunscreen, a hat and probably a shirt, but I hope I get to really enjoy moving around in the water.  I’ve done some simple leg lifts and indoor exercises today, but water exercise is always my favorite type of exercise.

Morning weight – 219.

Only a little sleep, then a wonderful day!

July 9, 2017 Sunday

Again last night, I got only a little sleep.  I was tired and went to sleep about 10 pm. Then my phone evidently decided to upgrade itself and I woke up to see the light on the phone.  I kept fooling with it from about midnight til two when the light finally went off.  I slept off and on after that until about 6:30 but then I got on up and got dressed.  I’m hopeful this was the last night of disturbed sleep from steroids.  Maybe!!  It’s really strange to be dressed and have breakfast and then look at the clock to see that it’s not even 8 am yet!!  You can tell I enjoy sleeping late.  Luckily there was a run of Sherlock on television that kept me interested.

I kept working on that quilt I’m trying to organize and I actually started cutting some on the 60 stripes for it.  Those stripes finally got done during the day. I went to Paula’s pool at 11:30 and we had a wonderful time in the pool.  The water was even not cold!!  The sun was great – it had some strange circles around it during our time out there but it was  beautiful.  Paula made me wear a waterproof bandage and I even made her put it over my port incision.  Then I decided that I would not even get that far down into the water so now I am sure that I have not infected that incision.  It is still covered in the ‘human superglue’ the surgeon used – it is well sealed.  It may never all go away!!  My legs are a little sore cause I basically stood and moved my legs for two hours in the water but it’s a good kind of sore.  I did use sunscreen but I do have some definite sun on my shoulders and neck.  I don’t think my scalp got too much – I did take and use a hat for a while – and my incision is fine, so it was just a great pool experience.  I just love being in a pool.

After the pool, I went home and fixed a nice chicken pot pie, microwaved of course, but it tasted really yummy.  I had changed back into nice dry clothes and sat in my favorite leather chair and had the first nap I’d taken in a long time.  It was fantastic.  I was nicely rested and relaxed afterwards.  Great afternoon.  I did more quilt organizing, identifying and organizing the 58 blocks I will need to make but now the next step is to actually start sewing those blocks.   I’m going to delete about 10 blocks in the pattern and will substitute a lot of churn dash blocks for some other blocks.  I think it will look nice.

Then I fixed a steak for dinner and now I’m watching Barnwood Builders as I love to do on a Sunday evening.  I have been wondering if the oncologist gave me the correct meds on Thursday.  I’ve felt a little strange sometimes, but never really bad.  I know the effects will only get worse and worse, but I’m just so surprised that I have felt so good all weekend long.  I am very thankful for this respite, don’t get me wrong.  It’s just like waiting for a hammer that you know is going to fall, to start coming down.  I have kind of changed my attitude this weekend – just taking it very easy and doing just what I want to do.  It’s been great.

I hope to go sew with the Dudettes tomorrow and see the quilt lady on Tuesday, get lab work done on Thursday, then hopefully head to Roswell to see the kids and grandkids on Friday for a few days.  The Roswell visit is kind of uncertain since if the kids have runny noses, I probably shouldn’t but I expect I may not should visit for sure after the second treatment.  I’ll just play it by ear and do what feels best.  I do plan to try to take good care of myself all during this process.  I do hope I don’t get too sensitive to the sun because I plan to get into the pool again this summer, hopefully several times.

Morning weight – 219.  Sure wish I could lose a little weight at some point, just a little in a gentle downward glide to normal.  We shall see.

 

 

 

 

 

 

 

 

Not the day I expected

July 8, Saturday

I guess the three days of steroids plus the steroid shot were still in my system last night because I did not sleep at all well and finally gave up at 6:45.  I felt fine during the day and did a lot of thinking work in redesigning a quilt I want to make but alter the directions.  Then I went and had a two hour lunch and long talk with some friends – that was a really nice time.  Then I came home and mowed my yard.  I finished just before the storm hit so my timing was perfect.  I’m really glad that’s done.

Then I rested a while and watched it rain.  I then went and bought waterproof bandaids so I can cover my incision tomorrow so I can go to the pool for a while.  The weather should be great and I have given the surgeon the week he requested before I go swimming, sort of.  May be a little short on his requirements but I think it is about healed anyway.

Now it’s after 9:15 and I am feeling a bit tired so I’ll shower soon and get to bed.  I certainly hope I sleep lots more tonight than I did last night.  I think I will since I had no steroids today at all.  Course, I may miss that boost of energy tomorrow.  I expect that if I will have an negative side effects from this first round of treatments and Neulasta, that tomorrow may be not as good as today has been.  I expect that I may run on less energy than I’ve been having, but only time will tell.

I’ve had a nice day today, though I did go by Bruster’s today and got ice cream.  Think that one visit will hold me for a long while though.

Morning weight was 218.  Not really going anywhere at all.  Maybe that’s not so bad.

 

I got shot with Newlasta today!!

July 7, 2017 Friday

I have been very busy today so I must be feeling all right.  I have gone to town three separate times and did a lot of errands.  I’ve made three quilt blocks today and finished the fourth border on another quilt!!  It’s been a very good day.

On one of the trips, I went to another Hamilton Medical facility, the Infusion Center.  This is where I will get a shot of Neulasta the day after each chemo treatment.  It’s a shot that stimulates my bone marrow to produce lots more white blood cells to replace those killed by the chemo.  Since it is making my bone marrow work so hard, it may make me have some strong reactions, including joint pains and leg pains, I think she said.  I had to stay 30 minutes after the shot to make sure I was okay, but I felt fine.  As long as I don’t get a fever above 100.4, I’ll be fine she said.  I have bought a couple of thermometers since I haven’t bought one in decades.  I was surprised at how much thermometers have changed – they are all new fangled things these days.  Anyway, since I have two of them, I should be able to figure them out.

I don’t think I’m reacting much at all to the chemo yesterday or the Neulasta today, but I feel like I am kind of ‘beside myself’ if that makes any sense and I think my face and chest are unnaturally red and hot!!  Not hot in a good way, tho.  I do expect reactions on
Saturday and Sunday, but hope they won’t be too bad. I know that these reactions will be the least of the reactions I’ll ever get so I plan to enjoy these more than the following ones.  I’ll let you know how it goes if I do get some reactions.  I understand that some people don’t get reactions.  No photos today.

My morning weight was about 218 – all that chemo fluid yesterday was a big part of that I expect, but then again, who really knows.  Oh, I have fixed a large jar with water and a crushed up orange in it as my main source of fluid for today. I have had a lot of water today to try to keep my kidneys healthy.  I’m really attached to those kidneys and hope to keep them for a long, long time.  Tomorrow, I may drink lemon water – what an exciting life I lead.

I am no longer a Port Virgin!! Chemo has begun.

July 6, 2017

I had a really hard time going to sleep last night.  I think it was all that ice cream that I overdosed on – since I have had almost no sugar in a long time, I think the sugar did a real number on me.  I really don’t think it was nerves about the upcoming treatment, probably.  I was also quite nauseated.  I don’t even want any ice cream any more now!! I remember seeing the clock say 3:45 before I ever got to sleep but then I woke up before the alarm went off at 7:45 and that is certainly not my usual habit.  Instead of the ice cream or the nerves, maybe it was the four steroids pills I took yesterday to get ready for the treatment.  Who knows !  Doesn’t matter now I guess.

Sue got me there right on time and we got nice seats in the chemo room.  I did have to get up and put the crooked blinds straight before I could look at them.  I was able to adapt to them all being at different levels but that was difficult.  I asked questions as she was inserting the needle into the port to withdraw blood and found out that the third day should be when I feel the worst from this treatment, so I guess Saturday or Sunday will be my most ‘fun’ day!  It took her a while before she committed the needle into the port but I felt no pain at all and I was really happy about that.

After the blood was drawn and taken away, she put more steroids and nausea meds into me, then two types of chemo and that was it.  I was there until almost 2:00 so that was only four hours.  I think I probably slept for about half or more of that time.  Just for the record I am still sleepy but I’m going to try to stay awake until a reasonable bedtime so I’ll sleep well tonight.  Hopefully.

I spoke with the lady next to me who has come for treatments every Thursday for the last five years.  She said it just keeps popping up in other places so I guess this is just part of her life now.  I spoke to another lady who asked if my hair was just growing back in but I told her this was my first treatment.  Today was her last treatment –  treatments including a spinal injection of chemo and injection into most of her major organs but she feels confident that there is no more cancer. She looked worn out so I hope she has no more cancer anywhere.

Since I’ve been home, I’ve been sleepy but I think considering last night, that is a normal reaction.  I’ve had a couple of times where my face would get suddenly hot for just a few minutes and I feel kind of  “off” and those may be side effects.  It’s not bad enough to be concerned about but it is different.

Tomorrow I have to go get a shot or infusion of Neulasta to help my white blood count.  Looks like I’ll find a new part of the hospital I’ve never visited before so maybe that’ll be nice.  The next two Thursdays I’ll go back to the oncologist for blood tests and then on the third Thursday, I’ll have another chemo treatment to begin the cycle again.  I’m glad I don’t have to have but four treatments – it’s a very boring place to sit.  I think sleeping through it was an accidental good idea.

I’ll let you know how I feel in the next few days.  I expect I won’t have many side effects for this round of treatment, but each round will get worse.  It’ll be worth it.

This morning I weighed 216 pounds so I’ve already gained some weight.  I feel certain some of that is the ice cream!!  Considering how much fluid went into my body today, I expect my weight will be even higher tomorrow morning.

Sue took some photos this morning that show a purple scarf I will probably wear if I don’t have hair by when it gets cold weather and my emoji blanket.  Aren’t they cute??   I also posting a horrible photo of me while sleeping through the treatment – I may have to arrange that again for every treatment.  I’ll need to get a net to put over my mouth so I don’t catch too many flies though.

 

 

 

 

 

 

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The Port is IN!!!

July 3, 2017

I was planning on arriving at the Ambulatory Surgery Center at 8:45 but they called me just before 8:00 and said the doctor was running ahead of schedule and I could I come on in?!?  So, I got out of bed, called Sue who was ready to go and we arrived about 8:20 or so.  By 8:45 I had checked in, had vitals taken, and was dressed in one of those little hospital gowns that are open down the back!!  Pretty soon, I had seen the doctor, had an IV in my hand and was being wheeled into the operating room.  I remember moving over to the other bed but that’s about it.  Everything went well and I was able to dress myself, get into Sue’s car and off we went to the main event of the day – Waffle House!!!  We were both hungry and we had a nice breakfast.  How can you possibly go wrong with a waffle and bacon???  It was very good tasting and I am glad to report that it didn’t make me sick at all.  One of the nurses said not to eat anything greasy – thankfully bacon is not greasy!!!  Yeah, right!!

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Sue dropped off my pain pill prescription and then we went to my house.  We watched a program on Netflix that is like House Hunters except that it’s in England.  We saw some of the most beautiful houses and countryside.  Actually, Sue saw more than I did because I kept falling asleep but I still enjoyed the shows.  Sue went back and got my pills and then we decided that since I was doing just fine she went home.  I spent the rest of the day napping and watching television.  It was a nice day and I was not even very sore.

This photo shows the lengths I go to in order to be part of the holidays.  I was red, white and blue just in time for the 4th of July!!  I had gotten a little sunburned the day before, the site of the incision was pretty much white and evidently I had some bruising below the incision site which looked pretty blue.

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By bedtime, I planned to take the pain meds to make sure I slept well, but after looking up Hydrocodone on my phone, I decided I didn’t really need them.  Those things look kind of dangerous and I wasn’t hurting too badly.  I did have to sleep in my bra since I had gotten another biopsy for the research study.  I did not have a great sleep but I did okay.  This morning I was more sore than I had been yesterday but it has never gotten really bad.  I did pick up a plant waterer and quickly put it back down since it seemed to ‘pull’  on my sore spot!!  Won’t be doing that again.  I can do things with my right arm and hard, including driving, but I just make sure I do it pretty slowly.  The doctor said no lifting of heavy objects, including grand kids, for two weeks so that’s going to be sort of tough.

I’ve decided that I should get a little more active than I have been, so I went for a walk.  It was only about 1/3 of a mile, but I sure was worn out at the end of it.  I expect the chemo treatments to make me tired, but I think that staying somewhat active won’t hurt me at all but might help me.  If I can keep it up – I’m a naturally lazy person, for sure.  Then Sue and I went to Longhorn to some supper but we won’t ate pretty healthy and refused any bread.  Now I’m more concerned about gaining weight throughout the process than I am about not eating enough – I figure laying around and watching tv is not what I need to do.

I am getting kind of nervous about the whole thing.  Twice today, I had minor issues – a stiff, tender finger and a fever blister – and immediately mentally blamed them on the chemo!!!  I know I haven’t had any chemo yet, but my mind is ready to blame everything on it.  I think it’s going to be an ‘interesting’ mental journey in addition to the physical journey. I still have one whole day before the chemo starts on Thursday morning and I am not looking forward to it.  Sue got me a nice fuzzy emoji blanket to take with me to the chemo session, so that’s something to look forward to.  I guess I can also look forward to enjoying just nicely sitting there reading or napping for 3 hours or so on Thursday morning.

Here are the photos of my gifts I couldn’t put in the last post.

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A sentence I’ve never said before and gifts from friends

July 2, 2017

I have heard from so many friends and family who have sent such nice greetings that I have been overwhelmed with positive thoughts.  I did not realize that so many people I knew had had cancer at some point.  They all sound so promising that I can get thru this that maybe I can.  I think I can, I think I can, etc  I will, I will, I will!!

I have even received many nice gifts to help me along the way.  A group of ladies I quilt with gave me a gift bag with a gown and other goodies.  A cousin who survived breast cancer sent me a book that really helped her out.  Other friends have given me fancy earrings and head coverings to keep my head decorated and warm.  Course, I think they may have given me the nice earrings just to get my regular earrings away – trying to make me look stylish!! I totally refused the lipstick ideas tho!  I really do appreciate all the support everyone has been giving me.

I’ve been trying to get my almost bald head a little bit tanned.  At the pool today, Paula and Sue convinced me I should put some sunscreen on my head or it would probably get burned, so I did.  When I got back into the pool, Sue said she smelled gardenias but there were no gardenias nearby.  I thought she might be smelling the sunscreen so I told her to “Smell my scalp!”  I had never, ever said that sentence to anyone before!!  She did and it was the sunscreen.  Now I wish I had used sunscreen on more than just my scalp because my face is quite red.  Hopefully  it’ll be back to normal by tomorrow!

Tomorrow will begin the real journey, I suppose.  I will go to the ambulatory surgery center to get my port installed.  I can’t help it, but whenever I hear the words ambulatory surgery I just picture lots of patients slowly wandering up and down hallways while doctors and nurses try to do surgery on them!!  I think my mind is a fairly warped place to visit!!  My first chemo treatment will be on Thursday – that’ll be the next big step.  Not really looking forward to that.  They tell me I may get ‘chemo brain’ – I just wonder if my brain can get much worse than it already is!!!!  We shall see.

I was going to put photos of the gifts I’ve received in here but I am on my iPad and I need to use my laptop to put photos in.  Maybe I can put in the photos when I tell you about my ambulatory surgery experience.

Guess I am as ready as I’ll ever be to start this experience.

 

My Hair is GONE!!

June 27, 2017

i did it!!  I had Frank shave my head so that my scalp could get some tan before all my hair is gone.   We decided to cut Coen’s hair first and he was happy to stand still the entire time Frank was using the shaver.  This is a photo of the three of us just before my haircut began and you can see how long my hair was.

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This photo is about when we were getting close to finishing  I kind of liked the Mohawk but I doubt I’ll ever have another one  then again, I never thought I’d ever have even one so maybe I’m ahead of the game!!

 

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The very top photo is after we had finished.  The nurse said to leave some stubble so I don’t get any ‘ingrown’ hairs.  I guess that means I will still have my hair fall out but this will still be better than handfuls of it coming out.

I did put some photos and info on Facebook and I’ve had so many very nice and supportive replies.  That makes me feel really good to know so many people support me.

I have to say that I know I should proofread these posts but I find that very difficult to do.  I like this program, WordPress, that I am using except that I have to manually add the period at the end of sentences, but I am having a great deal of trouble doing that.  I’ve been spoiled by my iPad I suppose.  When I forget to put a period, that means the first word in the next sentence will not be capitalized.  I’m trying to put those periods, but I know I’m not doing a very good job of it.

Also, several people have not found the button to be able to “follow” me – I’ll try to find that and point it out.  I might update each time by making this appear on Facebook, but I will have to figure out my password for Facebook before I can make that happen!!

That’s it for now!

ps  I have not yet figured out how to add photos so I will continue to work on that.

 

 

My first meeting with my oncologist.

June 26

I went to Dudettes, a quilting group I love to meet with twice a month, in the morning and then met Sue at the oncologist’s office to start the chemo experience.   Of course, I had to fill out paperwork and give vials of blood before I got to see the doctor!!  I like the doctor – she seems to have a good sense of humor and she seems to know her stuff. She was very matter of fact but she was able to laugh about things too. I think she was quite thorough in her explanation of my situation and she explained things well.   I will be taking two chemo drugs once ever three weeks on Thursday. I will be going to have lab work done on the two thursdays in between chemo days.  There will be four chemo thursdays so the entire chemo process should take about 11 weeks.  She said I should expect nausea, black nails, hair loss and fatigue as my major complaints and the problems will intensify as the treatments progress  I will be taking steroids and nausea meds and another med to build my white blood cells up.  I was surprised about the black nails, but expected the other side effects.

I’m a proactive type of person and the idea of pulling out handfuls of hair horrifies me.  Frank is going to shave my head tomorrow and then give Coen, my grandson, a haircut too.  I was thinking I was ready to shave my hair off, but the closer I get to it, the more nervous I am about it  I know it’s going to look bad but I just need to get look at it.  I want to get some than on the white baldness before I begin chemo cause the doctor said I might get sensitive to the sun during chemo.

I was a little pushy toward the doctor and asked her to get the process started as soon as possible.  So she got a little pushy to the nurse who was speaking to the surgeon’s nurse but they did speed up the process some.  I will be having my port installed next Monday, June 29 and beginning chemo that Thursday, July 5.  A different surgeon will be installing the port since my first doctor will still be on vacation on Monday.  I expect that will work out just fine.  I do have to go to an appointment with the new surgeon this Thursday to fulfill requirements for the port surgery.

After meeting with the doctor, I went to Hamilton Diagnostics and they took blood for a genetic test for cancer.  If the test comes back positive, then I will probably get a double mastectomy after the chemo is over and I won’t need radiation.  If the result of that test is negative then chances are that I will have a lumpectomy and the radiation.  Of course, it’s really way too early to make that decision yet.

It seems that this whole process is getting more and more real as it gets closer!  I have lots of friends who have been through cancer before and although I listen to hear their experiences, I expect my experience will have lots of little surprises for me.

I have been surprised to hear that some people gain weight during the process.  I hope that won’t happen to me because I’ve been trying to eat the right foods and the right portions since my therapist helped with the arthritis in my knee.  He suggested I lose some weight to help my knee and I’ve lost about 35 pounds since last August.  I plan to continue eating good food and cutting down my portions.  I hope the chemo process doesn’t make me too sick and interfere with my fairly healthy diet I’ve been on but we shall see about that.  I hope any readers won’t be offended but this, but in order to really document this journey, I am going to include my morning weight with each entry if I can remember.  This morning’s weight was 213!