Inching Closer to Last Treatment – April 9, 2016

I had my 3rd to last Herceptin treatment on Good Friday.  While the chemo treatment is usually 3-4 hours, I’ve been taking the entire day off and getting other things done.  This past time was breakfast with my former boss, a trip to the Post Office, a contact lens fitting, a diagnostic mammogram, and THEN chemo.

While Herceptin is a lot less hard on the body than “regular” chemo, I continue to have side effects.  I should have bought stock in Imodium when all this started; I take 2 every night and on some days I take more as needed.  I take Advil for headaches and muscle aches, and added Vitamin D to my regimen to help with muscle aches.  I get stomach cramps, intestinal cramps and the occasional nausea, but nothing is as bad as last year. It’s all sort of manageable.

I still have neuropathy, especially in my feet.  A friend described it perfectly – it’s like I’m wearing wrinkled socks all the time.  In my hands it’s not so bad, but with my feet it can make me a little unsteady at times.  Often upon standing from a sitting position, I have to make sure my feet are truly under me, and coupled with my muscle aches, I have to take a minute before I can actually move.  The neuropathy is still from last year’s chemo; the chemo I’m receiving now shouldn’t be contributing to the problem.  Given that it’s been 9 months since my last general chemo infusion, I’m getting a little concerned that I’ll always been wearing wrinkled socks.

I’ve been spending a lot of time lately reflecting:  reflecting on my work life and my volunteer life.  I think I’ve said before in this blog that life is too short, and while I’ve always had that philosophy, having cancer really reinforces this for me.  And so I’m practicing what I preach.  I resigned from a volunteer position I loved because I discovered that the founders, while perhaps not doing anything strictly illegal, are skirting the line of law, and are most certainly unethical.  It’s disappointing to realize that one’s been duped for 3 years by 2 of the most unethical people I’ve ever had the displeasure to know.  I have to keep reminding myself that I was a part of a lot of good done in those 3 years, but life is too short to spend working for people I can’t respect.

As for work, I’ve been reflecting on that, too – what makes me happy, what doesn’t.  No job is perfect, but some things are easier to let go than others.  I’m trying to decide how much I can let go and what I can’t.  Life IS too short – too short to be unfulfilled or unhappy whether working professionally or as a volunteer.  Life also goes on, and that’s a very good thing.

 

A Year Ago Today – January 29, 2016

A year ago today I had my first chemo infusion.  Little did I know that day what my year would be like.  It’s a little surreal to think about all that’s happened.

After last week’s infusion, I stopped to talk to a young woman who was just starting her chemo treatments.  She and her family had a lot of questions, which I hope I was able to answer.  What I found interesting was that I’ve actually forgotten the names of my chemo drugs, except for Taxotere, Perjeta and Herceptin.  I had to look them up to remember what I got and when.  Honestly, I don’t think I’d wish chemo on my worst enemy.  And I don’t think I had it as bad as some folks.

It’s been a while since my last post!  The holidays were nice; my whole family was able to gather for Christmas Eve.  Our dryer broke (it’s okay, it was over 25 years old) so we ordered a new one, but that meant cleaning out a path in the garage so it could be delivered and installed.  That took up much of what free time we had over the holidays. And then we left for Anaheim and the Rose Bowl – a little vacation with friends.  We went to California Great Adventure, Disneyland, and, of course, the Rose Bowl, where my beloved Cardinal destroyed the Iowa Hawkeyes to win its 2nd Rose Bowl in 4 years.  We drove back on the 3rd, and when we got home, I was feeling off.  I thought it was just the busy vacation.  I took the morning off and then headed for chemo on the 4th.  I was running a little fever, 99.1 degrees.  Well, that was just a precursor to the worst flu I’ve had in years.  I got a flu shot, but apparently it wasn’t very effective this year.  With all the people at Disneyland/Great Adventure and the Rose Bowl, I’m sure I picked up the flu bug there.  I had a fever of 103.3 for a night, and over 101 for several days.  And then I got a cough which I still have, although it’s getting much better.  Not the way I wanted to start 2016!

When I was finally able to go to work, it was to unpack my office – my staff and I moved locations while I was home sick.  I’m finally starting to feel settled at work, and we love our new space.

At my appointment with Dr. P last week, I asked her if taking Vitamin D would help with my muscle aches.  I also asked if I should contact my PCP about switching out one of my high blood pressure meds, as was suggested by Dr. S’s consult with the nephrology doctors, to help with my low magnesium.  So now I’m taking Vitamin D and I’ve changed one of my meds.  This week I’ve had my usual bout of diarrhea.  I also had a terrible headache on Monday, and I’ve had terrible muscle aches.  I know the Vitamin D, if it’s going to help, will take a few weeks to kick in.  But I decided to look up the side effects of Herceptin again, because I’ve obviously forgotten.  First 3 side effects?  Diarrhea, headache, muscle aches!  So I guess this will continue until at least May.  I think I’ll take Imodium every night for a week after my next infusion to see if that helps with the diarrhea; I can take Advil for headaches and I’ll hope the Vitamin D helps with the muscle aches (Advil helps with that).

Here’s to 2016!

 

One Year Later – December 15, 2015

Today is the one year anniversary of my breast cancer diagnosis.  What a year it’s been.  I’ve had:  2 breast MRIs, 4 echocardiograms, 1 blood infusion, 16 rounds of general chemo, 7 rounds (and counting) of targeted chemo,  and 30 radiation treatments.  I won’t even begin to count the number of blood draws, Neulasta shots, and stool samples I’ve endured.  It’s been worth it, though, right?  To be able to say I’m cancer free?  I know the docs won’t say it for another 4 years, but I’ll say it.

I had chemo last Thursday.  I had to move it from Friday because Friday was our office holiday party.  The treatment before, on November 20, was the exciting one.

Because I’d had a positive test for C. Difficile, even thought I’d been treated, the protocol until I had a negative result was that I needed to stay away from other chemo patients and be given my infusion in an isolation room.  The problem is that the Palo Alto facility isn’t yet equipped to do this, so I had to be given my infusion in an exam room.  Thus they had to free up a room, which meant they had to change my appointment from 2 pm to 4 pm.  Exam rooms aren’t nearly as comfortable as the lounge chairs in the infusion center; there’s no music, no juice or crackers – you get the idea. Oddest infusion ever.  I had to give another stool sample to be tested, and fortunately it was negative.  So my infusion on the 10th was back in the infusion center.  I missed it.

I got Herceptin and…you guessed it – magnesium.  My mag remains stubbornly low at 1.4-1.5, so my quick hour long infusions are now 3 hours from beginning to end.  Oh well.  At least there are few side effects – just the ever present diarrhea.

Which leads to my latest problem – the worst hemorrhoids ever. And of course I would get them when I’m going to the Star Wars marathon – all 7 movies in one sitting.  I’m contemplating getting a doughnut to sit on, although what I’d really love is a heating pad. The heat seems to help the pain – at least it did last night.

My next infusion was supposed to be New Year’s Eve, but we will be in southern California to watch my beloved Cardinal take on Iowa in the Rose Bowl.  So I’ll have my next infusion on my first day back to work on January 4.

For now, though – May the Force Be With You!

 

Week 4 of Radiation Done! – November 9, 2015

Things are moving right along!  I finished week 4 of radiation with no difficulties at all.  I finally saw Dr. L on Thursday (he was busy Tuesday and Wednesday) and he told me that I’ll actually only need 25 treatments.  This means that this week is my final week of radiation!  The time has actually flown by, all things considered.  I really do think that Dr. L was able to increase my doses because I’m tolerating the treatments so well.  I don’t have any burns whatsoever; other than feeling more tired than normal (and feeling like I could take a nap any time), things have been “normal.”  Exciting!  I feel that when radiation ends, I’m 90% done with my treatment.

I mentioned in my last post that I hadn’t had to take any Imodium for almost a week. Well, I spoke too soon.  Almost as soon as I hit “Publish” I had diarrhea, and it didn’t really stop until today. I decided to take Imodium when I go to bed which helps the diarrhea in the mornings. I did contact Dr. S (GI doc) but I haven’t heard back yet. I think that this round of diarrhea is the result of chemo; the only way to test the theory is to see what happens after my next round of chemo. In the meantime, I’m managing the diarrhea.

My joints are sore, which leads me to believe I have a mild case of myalgia, which is a possible side effect of Herceptin. It’s hard for me to move if I haven’t moved in a while, such as driving to work (typically a 50 minute drive) or sleeping. It’s hard for me to take off a shirt, too. I’ll ask Dr. Priya about it again when I see her next week. I’d asked her about it before, but I talked about my knees only.  I can deal with it, but I’ve learned to ask rather than keep silent.

Only 4 more radiation treatments to go!

Week 3 of Radiation Done! – October 31, 2015

Week 3 is in the books!  And thus far still no burns. Just a little redness right after the treatment, which is gone by morning. Last night there was a bit of heat along with the redness, but this morning there’s nothing.

Dr. R told me this week that my treatment will indeed be only 30 treatments, which means I’m halfway done with radiation! Apparently I’m tolerating it so well they’ve tinkered with the dosages so that I’m getting a little more each time, which allows me to have only 30 treatments rather than 33-36. I will be done with radiation by November 20, the Friday before Thanksgiving. I’m happy about this, and hope that I continue to tolerate the treatment as well as I have been. I’ve been lathering my breast with 100% aloe,  at least twice a day, along with an aloe cream that a colleague gave me. Maybe that’s why things are going well – that and the fact that I tend to tan rather than burn.

Aside from the lack of burns, I am feeling a little more fatigued, as anticipated. I don’t have as much energy and need more sleep than typical. Not surprising, I suppose, but annoying as heck for someone who is used to having energy to spare and operates on 4-5 hours of sleep a night. Having to sleep 8-9 hours just seems like so much wasted time.  🙂

As for my diarrhea problems, I haven’t had to take any Imodium since Saturday, but mornings continue to be tough. It seems to be getting better, but only ever so slightly. At least I haven’t any diarrhea for a week. I’ll count my blessings.

I had chemo yesterday: Herceptin along with 2 grams of magnesium. Seems to be my typical infusion these days, until we can figure out why my magnesium is so low. Otherwise the infusion was uneventful. I even got a little nap in – which I’m needing in addition to more sleep at night.

Each day brings me closer to the end of my overall cancer treatment. Onward!

Post Surgery Recovery Continues – September 11, 2015

My recovery continues! Of course I had to have a little complication…On Sept 2, I went into see the PA because I thought there was an infection at the end of my right breast scar, in the armpit. Turns out that was not an infection, but an irritation, similar to a pimple or ingrown hair. One of the stitches had poked through and with the bra and being under my arm, the area got irritated. I told the PA I was worried because the scar from the port installation got infected, so she took a look at the rest of my scars and she noticed a few areas of concern. She decided to put me on antibiotics, and instructed me to put on bacitracin on twice a day and cover the areas. She wanted to see me on Friday, before the long weekend for a recheck.

That same day I had an echocardiogram. I need one every 3 months because I’m on Herceptin. All is normal.

At my recheck, Dr. White actually came in to see me, in addition to the PA. He said he was glad the PA put me on antibiotics and said that things look to be on track.  The PA asked that I put bacitracin on once a day through Labor Day, and then stop, which is what I’ve done. The infected area under my left breast is healing, but the right is lagging behind. I hope things start clearing up soon – I want to be able to swim in Maui!

Just after my last blog post, I had a round of Herceptin, along with 2 gr of magnesium. Previously, getting magnesium was 1 gr/hour, but this time the 2 gr took only an hour. I asked why this time it was faster and the nurse said that they could administer the magnesium more quickly because I was receiving it through a port. Which led me to ask why it took so long for them to figure that out…Oh, well. I don’t really mind being in the infusion center. It’s actually kind of pleasant, and since I know all the staff and my way around, it’s not a big deal. My next round of Herceptin is a week from today.

Hair has started to grow back – eyebrows and eyelashes are the most noticeable. The hair on my head is also growing back, but there are still some bare spots. I decided that I was going to continue to shave my head until I’m done with Herceptin. It just means that Ted has to shave my head at least twice a week. While I’m curious how my hair will look (chemo changes your hair), I feel it’s more important to show that I’m still undergoing treatment.  🙂

Other than the infection, I am feeling good. I get tired easily and need more sleep than is typical for me, but I feel my strength is slowly returning.  I am super bummed about something, though…I had to decline an invitation to speak in Sydney, Australia and Singapore in late November. I checked with my radiation oncologist, and the timing is just too tight. Even with moving my initial appointment and simulation (where they do all the measurements) a week earlier than scheduled (to October 2), if all goes as planned, I would finish the Friday before I would need to fly. That leaves no wiggle room in case I have an adverse reaction and need a few days off from radiation treatment, and we don’t know what side effects I’ll have even if things go as planned. I understand that fatigue is the most common side effect. Flying 15 hours probably isn’t the best thing to do at the end of 6 weeks of radiation. I can only hope that the organization will invite me again – I would be thrilled.

Tomorrow is the first home football game for my beloved Cardinal – and let’s hope the team plays better than last weekend.  Other fall sports have started, and soon hockey will be in full swing. I do love fall!

Two Weeks Post Surgery – August 27, 2015

It’s been 2 weeks since my surgery!  I was a pretty good patient and tried not to use my right arm at all for the 2 weeks in order to prevent lymphedema.  Let me back up.

The morning of the surgery, I reported to the Breast Imaging Center so that a locating wire could be placed in my breast to the clip which was inserted at the tumor site before I started chemo.  Then I was carted over to Nuclear Imaging so that a radioactive tracer could be injected into my breast, to help with the identification of lymph nodes. I will tell you that little injection hurt like nobody’s business – so much so that the nurse told me I could squeeze her hand as hard as I needed.  Fortunately the pain was short lived.  By then we were running late, so I was taken in almost right away at the Surgecenter, and my sister (who drove me) couldn’t come to visit.  After vitals were taken and I dressed for surgery, the anesthesiologist came to see me.  I knew that the surgery was scheduled for 3.5 hours, which meant I’d likely have heavy narcotics for the anesthesia.  So I warned the doc that I don’t react well to anesthesia.  He thanked me for telling him and said he would take extra precautions; we then discussed getting a patch which I could leave on for 1-3 days to help with post-surgery nausea.  I agreed, and shortly after the anesthesiologist left, I got a visit from Dr. White, my plastic surgeon.  He then “marked” me for the surgery, taking measurements and marking my breasts with a Sharpie.  Then Dr. Ching came in to check on things.  She reiterated that the surgery may need a follow up surgery if there aren’t clear margins from what she was going to remove.  I told her I had faith that everything was going to be fine – that I’d need only one surgery.

Soon thereafter I was wheeled into the OR, where the anesthesiologist was waiting.  I was out just a few minutes later, and woke up in recovery four and half hours later.  Dr. Ching came out to talk to my sister and let her know that everything looked good; she removed 3 lymph nodes in addition to the tumor area and a few other areas. Ted arrived at some point so my sister could go to work, and so it was Ted who joined me in recovery.  About an hour later I was ready to go home.

Despite the patch, I had nausea for the next day.  I finally decided to remove the patch and since I wasn’t in a ton of pain, to switch from Percocet to Tylenol.  Once I did that, the nausea stopped although I had very little appetite.  I’ve also had diarrhea pretty much since my last dose of chemo on July 31, and 10 days of antibiotics did not help. The diarrhea continues, but I’ve started taking Imodium again and that’s helped.

I’ve had experience not using my right arm before; in November 2011 I had right shoulder surgery.  My arm was in a sling for a while, although I was not 100% compliant, I know what it’s like to have to use my non-dominant hand for everyday tasks.  At least I didn’t have to worry about brushing and washing my hair one-handed! Actually, I wasn’t allowed to take a shower until my first post-op with Plastic Surgery, exactly a week after my surgery.  I tried my best not to use my arm, and since I was banned from using the computer, I’ve discovered the joys of Netflix and Amazon Prime streaming.

On Monday the 17th, 5 days after surgery, Dr. Ching called me with the pathology results.  The news could not be better:  NO CANCER ANYWHERE!!  The tissue removed around the tumor site showed all signs of having been changed from chemo; the additional areas removed had no cancer as well as the 3 lymph nodes removed.  No second surgery is needed.  Dr. Ching said that I was one of the rare people who is a complete responder with chemo, so all those months of chemo were totally worth it. It feels really great to know that I don’t have any cancer!

You might ask if that means my treatment changes at all, and it does not.  Because I chose a lumpectomy rather than mastectomy, I will still need radiation (for 5-6 weeks) and I still need Herceptin (targeted chemo) until May or so.  But to know that I have no more cancer has been the best news since, well, December 15, 2014.

My best friend Kim took me to my first post-op, after which we went to lunch.  After a lengthy surgery and a week of doing nothing, it was amazing how much that one little outing tired me out.  I went to bed very early the next two nights, sleeping a lot more the following day.  That told me that the surgery – and 6 months of chemo – has really taken a toll on my body, and it’s best if I rest as much as possible during my medical leave.

On Monday, I had an appointment with Dr. Ching, to which my friend Kim took me again.  Dr. Ching said that my breasts looked great.  I admitted that I hadn’t been 100% compliant about not using my right arm, and she said it was okay – that they tell patients not to use it at all, expecting not 100% compliance but maybe 70%, and that was actually enough to prevent lymphedema. Since I didn’t have lymphedema, and things were looking good, my next appointment with Dr. Ching is in six months.

I got clearance to be able to use a computer, knit and drive, so today I drove myself. First thing in the morning I had a blood draw because I’m scheduled to have Herceptin tomorrow, and then I went to Target to pick up a few things.  I felt faint in Target, another sign that I need to take it easy while building up my strength.  I came home and took a nap.  Naps are good.

I had another post-op with Plastic Surgery in the afternoon.  Dr. White came in to see how I was doing, and he seemed pleased with my progress.  I asked him about some areas which seem to “pooch” out; Dr. Ching mentioned that Dr. White could liposuction those areas.   Dr. White said he could but wants to wait for 6 months, when things should finally settle down from the surgery.  Then the PA removed the plastic bandages which covered my stitches. The stitches will eventually dissolve, but as the swelling recedes, some stitches get uncovered before dissolving.   The PA trimmed some of those, removed the glue using a type of “Goo Be Gone” for the skin, then dabbed antibiotic ointment around my scars.  She wants to see me a week before we leave for Maui, because if my scars aren’t closed by then I won’t be able to swim.  😦  Otherwise, I don’t need to see Dr. White again for 6 months.

I then went to Oncology:  I had an appointment with Dr. Priya, in which we mostly chatted about my nieces and nephew, and the pressure on high school students.  That was after we discussed that my magnesium was low (I’ll get 2 gr tomorrow), and that I can get my teeth cleaned now.  I told her that I was going to get an implant for the infected molar which was removed, and she told me to put it off until next year. I asked her why, and she said that with the chemo, surgery and radiation that she wanted my body to recover before getting an implant.

So how do I feel?  There is soreness in my right armpit, where the lymph nodes removal scar resides.  There is tightness around the scars under my breasts, and I need to wear a bra 24/7 (or as much as possible) for at least another week.  I’ve tried not wearing a bra, but after a few hours, my breasts get sore and tight, so a bra helps.  At least I can switch to a sports bra, or a camisole with a bra built in.  The bra which I received post surgery provides more compression than support, and I was getting tired of it.

Nerves were all messed up and jumbled during surgery, and it takes about 6 months for them to figure out what they should be doing.  What that means is there have been nights when I’ve been woken up by a shooting pain in my breasts.  It happens during the day, too, but when you get woken up by sudden pain…well, it’s just surprising.  At least the pain isn’t constant or all that painful – it’s more of a shock than anything else.

A work colleague set up a Meal Train for us for the past 2 weeks, and it’s been a big help for Ted not to have to cook in addition to taking care of me and the boys (our 4 cats). The generosity of people never ceases to amaze me, and I am ever so grateful for all the support we’ve received.  In addition to the Meal Train, I’ve gotten 3 beautiful bouquets of flowers, a gift certificate for dinner delivery, chocolate covered strawberries, homemade cookies, numerous get well cards – the list goes on.  I am a bit overwhelmed at my “village” and thankful for all of you in my life.

I plan to continue to rest as much as possible, but to start to resume some activities. After all, football season starts next week!  Fall is my favorite time of year.  I hope radiation doesn’t take too much out of me; I start in October and hopefully I’ll be done by Thanksgiving.  I’d love to host Christmas this year!