End of the Beginning

On August 28, 2017 I had my medi-port installed - and that Thursday I had my first chemo treatment.  On August 22, 2018 I'll have the medi-port removed signalling the end of treatment! It's definitely a milestone!

Radiation ended July 25th and, since then, I've been healing.  My skin under my arm got really black before it peeled and is now a nice pinkish color.  There are still areas that show damage from the radiation, but they're healing and I didn't blister (which is good).  Some of the Sharpie marks are still there too but they're fading with every shower.  It's great not to have every day appointments any longer - I've been told I'm "transitioning into survivorship" - monthly appointments for a while then 6 months, etc. 

So, it's really the end of the beginning!

I'm taking Letrozole to help prevent a recurrence - my cancer is hormone dependent and the letrozole blocks estrogen from attaching to the cells - hence no growth.  In addition it can have detrimental effect on bones - causing bone loss.  Not good, especially when my bone density test showed osteoporosis - not terribly unusual I suppose given my age (!).  So, I'm also now taking Fosomax once a week.  Haven't noticed any problems with either medicine except when it rains or storms - then I have terrible bone/joint pain.  Luckily it's nothing that Aleve can't handle!

Anyway - I'm glad for the end of the beginning and the the beginning of my new normal - which doesn't look so bad right now!

Closer to the end

I just noticed that it's been a long time since I last posted - since March 4, chemo ended; surgery was April 27 (went very well - no pain, minimal upset from the drains and no problems sleeping!) and I started radiation. 

Week 5 (of 6) starts in two days so I'm almost finished with that too - another step on the road to recovery! Radiation itself lasts about 8 minutes from the time I walk into the room until I'm dressed again - so it isn't long at all.  It is every day Monday - Friday so that can be annoying sometimes.  I haven't had bad reactions (at least not yet) but there is some redness of my skin (I use ointment) and a wee bit of nausea that quickly passes.

I'm also taking Letrozole which is a synthetic hormone that blocks the hormone receptors on my cells so that real estrogen can't get there and cause additional cancers.  So far that's working well too - no major bone pain but I do have to take more Vitamin D to combat bone loss.  All in all I can see a light at the end of this tunnel - and it should be almost exactly 1 year after I first went to the doctor because my right breast didn't look right.

I haven't really been depressed through all of this - I've had wonderful support from family and friends and certainly couldn't have done nearly as well without the caregiving of my son - I have thought about the strangeness of it all - I never thought about my getting breast cancer, never thought about having a breast removed or undergoing chemo and radiation.  Sometimes I think about how strange it all feels.  I do think I'm very lucky to live right now - there are so many advances all the time in treatments.  I'm near a good hospital and oncology center, I have a wonderful oncologist and all the people I've met through chemo, surgery and radiation have been wonderful.

Phase One

It's the beginning of March and there are two more sessions of chemotherapy before surgery.  I guess this is the end of phase one of the process - it's been an ordeal that's for sure.

I've lost almost 60 pounds but maybe that's a good thing because I've read that some of the drugs I need to take after surgery can cause weight gain - of course, apparently, chemo can cause weight gain in others but certainly not me. 

I think I've decided to have the mastectomy without reconstruction.  I'm really not interested in more surgery (to replace the tissue expanders) and an additional 4-8 months of trips to the doctor for fluids (for the expanders) and possible additional pain from surgery to find skin (should there not be enough left after the removal).  All in all, I do know that I'd like this to be over - to move forward with my new normal and to get on with my life.  The surgeon said she didn't want me to regret this decision in 5 years - I said that in 5 years I'll be 73 and I doubt it will really matter! 

I'm doing ok for the most part - great family (of course); excellent caregiver (who worries more than I do); wonderful friends and a great medical team.  But I'm tired - tired of feeling less than 100%; of being weak; of being tired! 😊

Progress is slow but it is happening - one baby step at a time.

Abraxane

The new drug, in place of the Taxol, is called Abraxane - it is so much better, primarily because I'm not having an allergic reaction to it, but there are some side effects.  The first one that I had was muscle and bone aches in my legs.  Uncomfortable but not horrible, especially since I could take Aleve and alternate that with Tylenol.  It only lasted a couple of days and then eased up a lot.  The second side effect was more annoying and made life harder - diarrhea.  It would start with actually not going at all one day, then abdominal pain and the beginnings of looseness the next.  The first week was about 3 days, the second seemed to start sooner and be a little worse.  It is controllable (I am allowed to take Imodium) but honestly, that didn't seem to make much difference in the length of time it lasted.  It's almost at an end when the tremendous gas pains begin but, was still in effect enough today that I had to cancel a lunch out with a friend - I certainly didn't want to be somewhere, eat something and have to make emergency trips to the bathroom!

Luckily I have wonderful friends who understand my inability to plan more than 5 minutes (or so it seems) and are adaptable to my side effects! 

The good news about this treatment (there are 12 in total and this Thursday will be #10 counting down from 12) is that it's for three weeks with a week off - so I'm treatment free the Thursday before Christmas and should be feeling fine with all side effects behind me!  At that time I'll also be in single digits for the number of treatments left!  YIPPEE!!

I have a meeting this Friday with my surgeon - have lots of questions for her.  I've been on a board on Facebook for cancer patients (not all breast cancer) and have heard some things I definitely need clarified - for instance - tissue expanders - will I need them??  I'm not sure I want to have them as I've heard that some women have them for months (or longer).  I want this to be over and not to delay anything!  If the reconstruction is done immediately (without expanders necessary) and recovery can then begin, it's one thing.  Otherwise - flat isn't so bad!  I'm not 20 anymore - don't really care what I look like to other people.  Hopefully she'll have answers!  PS I have high hopes, since the oncologist said that by simply squeezing my breast, he couldn't feel the lump anymore (and neither can I really) that the lump has shrunk enough to make the surgery easier.  I'll find out!

A long time

It's been over 6 weeks since I posted last and a lot has happened.  After the last A/C treatment, I didn't bounce back at all - in fact I got worse.  The diarrhea got worse, I could barely eat or even get out of bed.  I went weekly for my blood work and it wasn't getting better - I got fluids twice and that helped for a couple of days but then I was back in the same predicament.  Finally, on November 9, at my meeting with the doctor to start the next round of treatment with Taxol, the doctor said, "we're going to admit you to the hospital and see what's causing this".  By this time I was losing 5-7 pounds per week - not good! 

That was a Thursday and I went into the hospital.  They finally were able to get the samples they needed for testing in the next day or so and found that I had an aggressive intestinal bacterial infection that meant that I was in isolation and anyone visiting had to wear gown and gloves and not touch me.  😓  It was definitely scary, especially when the first antibiotic didn't work.  I was switched to an oral antibiotic - vancomycin which, along with probiotics and Questran did work.  Gradually things got better.  I was receiving fluids and lots of enzymes as my levels were way down but eventually I was able to go home the Tuesday after I arrived.  I was SO happy to be back home, even with a strict regimen of pills and oral meds to take.  Each day I got stronger, ate more, drank the right amount and best of all, intestinal functions improved!  I was lucky to have the wise counsel of friends who were familiar with the disease and could ease some fears!

I was well enough to restart the next round of treatment with Taxol Thanksgiving week but it didn't go well at all.  There is a reaction to the drug in very few people, but, of course, I was one.  After only 4 minutes of receiving the drug, I was horribly flushed, my lower back was in agony (going down my legs), my stomach was cramping and I was vomiting.  Not fun at all!  They stopped the medicine, pushed saline and then gave me Ativan to calm me down (after determining I hadn't driven myself!).  Once I got home, and was calm, I felt much better. 

The next week (this past Thursday), I met again with the doctor who said that the reaction isn't actually to the Taxol but to the protein its bonded to for delivery.  Apparently that protein and I don't get along at all!  We started a different drug - similar but not with the same protein - and that treatment went well.  I feel great - still eating, drinking and now I'm able to get out on my own!

It was so funny, a few days after I got out of the hospital, I felt well enough to drive myself to the bank and deposit some checks.  My son laughed at me and said "what, you want to drive your new car"?? He's put many more miles on it than I have, driving me to the doctor's, the hospital and getting groceries in the time when I'm getting treatment!  I'm so very lucky to have such a great caregiver with me - I don't know what I'd do without him around.

It's been three days since the treatment and I've not experienced any noticeable effects so I'm hopeful this will continue and that this treatment will be successful.  It's one more step along the way - I certainly don't want to go back to the way I was in October and early November.

Fourth Treatment - DONE

The two weeks between treatment three and four were horrific.  There isn't another word to describe the misery of those two weeks.  Extreme gastric problems (which I won't elaborate except to say prescription medication became necessary); lack of appetite to the point of very little food intake (to the concern of my caregiver); lethargy and finally, IV fluids were required despite the fact that I was, indeed, drinking water.  I lost 5 pounds in those two weeks. 

My blood work was very bad at the 1 week testing - white count down extremely low - it drops each time but never this low - and it rebounds by the next week which it also did this time but not as far.  Because of that and to keep the count from dropping so low, the last treatment dosage was lowered 25%.  Here's hoping that the lower dose keeps the blood work positive and also lessens the effects of the treatment. I don't want to relive those two weeks - even if this treatment (4) is the LAST of the dual-drugs!!

I asked (and received) an extra week off between this last dual-drug treatment and the start of the single drug weekly treatment.  Hopefully, as I told the doctor, I'll have more than 2 days where I feel 90% like a real human!  Everyone I've talked to, including my wonderful chemo nurse, has assured me that the single drug (Taxol) is much less severe than the others and won't affect me as much.  I was seated next to a woman who was getting her first Taxol treatment (she's a step ahead of me) and, unfortunately, she had a rather immediate reaction to the meds.  The nurses knew just what to do, stopping the meds, giving her benedryl and within a few minutes she was fine.  Apparently she's not allergic to the med but to an additive in the delivery system - I'm not allergic to many things and I sincerely hope this isn't one!  We'll see in three weeks!

On the positive front (and there definitely was positive news) - the doctor did say that my treatment has been aggressive and, people over 65 (ME) can be more affected than younger people.  However, doing a cursory exam he said he could no longer feel the lump (which was not the case 6 weeks ago) so he was encouraged that it had reduced that much with only 3 treatments (the fourth was yet to be administered).  Any time he's encouraged, I certainly am!  On a secondary note - I've been trying since July to lose a few pounds and as of yesterday I've lost 24!!  The past few weeks haven't been a recommended diet but the first pounds off were simply by limiting (not eliminating) carbs in my diet and that was slower (of course) but effective.  I'll take all the positive news I can get!

I have wonderful friends and family who are very supportive.  I love all the cards, FB comments, Messenger messages, phone calls and gifts.  I can't say enough how much it means to me and how much all the people are important in my life.  Y'all are the best!!  💗💕

Is This Living?

This is a question I've been asking myself (somewhat jokingly) the past few weeks as the effects of treatment have been so debilitating.  These effects began after the second treatment and became even worse after the third, when the questioning began.

My home has shrunk to three rooms - bedroom with attached bath, family room with nearby powder room and kitchen.  Within those rooms, the constriction is even more - bed, chair (recliner) or more recently sofa, and refrigerator (ice and water in the door!).  My world has shrunk to primarily two places - home and clinic.  Going to the grocery store a week or so ago was too much and I had to bow out prior to checkout and sit in the car while my son completed the task.  I haven't been out on my own in well over a week - probably close to two - and actually asked my son the other day how he's been enjoying driving my new car as he's done more than I!  (He says it's good!)

I'm so weak, occasionally dizzy (not so much with an adjustment in medication) and worn out that even the thought of going to get the mail or putting out the trash is overwhelming.  The TV is constantly on (and that's fairly new for me), tuned to something innocuous just for the noise.  I don't care what's on really, the sound is down to barely audible but there's someone talking - someone there.  I haven't been reading much lately which is also new and it's because reading, even light romances, requires thinking and some concentration and I just can't.  I have been able to continue playing Words with Friends and have to thank my friends for not bailing when it takes me a day (or more) to respond but even that is sometimes just too hard.

This is not to say I'm not surrounded by love and support because I am - family, friends, caregivers - everyone is on my side and that is amazing!  But I'm used to doing things - going places, not depending on others to carry for me and it's hard to realize that just isn't possible right now. 

So, to answer my own question - Is This Living?  The answer is YES it is - for the moment, for now.  Later will be different - later will better, but right now, this is my normal and I need to make the adjustment.  Those around me have - my youngest has become an excellent caregiver and doesn't mind repeated requests for toast or more ice water or whatever.  My oldest calls to check on me, makes sure I don't need anything, friends check-in daily by phone or text - it's ME who needs to make the adjustment.  ME who needs to accept what is and not bemoan what was, look forward to what will be and not focus on what's right now.  This is temporary, I will get better, I will survive and I will thrive.  There are always setbacks in life - this is just another. 

Yes, this is living and it's the best life I have right now - and we're all fighting to make it even better.