Jennifer, Hats, Scarves, and Jane Austen

One of several close friends named Jennifer (I once worked in an office full of Jennifers – six in all) was in town late last week and over the weekend. She was kind enough to come over and hang out with me for part of her time here.  Not the most thrilling of endeavors for a visitor, particularly during the first week after a “big” chemo, when I am likely to be even less active and engaged than usual.  She was a good companion and seemed content with the slow pace of things, my occasional lost thoughts, and unfinished sentences – the joys of chemo brain.  We caught up on news, though honestly there was very little news that I could offer, watched Pride and Prejudice (the Knightley version) for the umpteenth time, and she helped the household along on its quest to complete some leftover Sunday crossword puzzles. 

Jennifer also very gamely watched YouTube videos with me of women demonstrating different ways to tie headscarves.  I can manage to tie a decent square scarf, but had not ventured into the realm of oblong scarves.  Jennifer, a very creative and crafty person, in the best sense of the word, adeptly wrapped me in some of the styles we saw, and gave me confidence to give it a go myself.  I even wore one to the local repertory theater on Sunday night where I saw the ever-cheery MacBeth.  It was fun, like playing dress up when I was little.  She even brought me a fabulous fleece hat she had made herself – soft, warm and comfy.  I would post its picture here now, but it went back to Minnesota with her for some slight adjustments  -- my head is apparently quite small, so she will adjust the size a bit. 

It was lovely to have a fresh face on the scene and to have someone here who was comfortable and easy with the snail’s pace of activity at my place.  If one is looking for excitement, this is not the place to be, at least at the moment! (If ever!)  Thanks for spending time your time with me, Jennifer.  It was great to see you!

Blood Counts!

As I watch the rise and fall of various factors in my weekly CBC (Complete Blood Count) certain trends have emerged. My hemoglobin levels were within normal range when I started this journey. However they have never fully rebounded since that first chemo back in November. They have been below normal range every week since then. They were sufficiently low last Monday that I needed a blood transfusion. I’ll be curious to see tomorrow’s CBC and find out how the transfusion of someone else’s blood impacted my hemoglobin levels. I don’t feel any different, but then I wasn’t overly out of breath or more fatigued than usual before the transfusion, which are symptoms many people have when they have low hemoglobin levels.

However, my bigger concern this week is where my platelet levels are. The last time I was scheduled for chemotherapy we had to postpone it a week, because my platelet levels had dropped below 75 (75,000 per micro liter of blood). Last Monday, they had dropped to 81. I can usually count on them to drop even further by the time I’m scheduled for my next chemo session. If they have fallen further, I’m likely to face another delay in receiving chemo, something I would really rather not have happen. I want to keep moving forward and any delay at this point is a bit hard to swallow. So, I’m keeping my fingers crossed that my platelets will somehow be at least a 76!  Is that too much to ask? Tune in tomorrow!

To Buzz or Not to Buzz…

Despite my initial thought prior to chemotherapy that I would want to shave my hair off the minute it started to fall out, and then the surprising pendulum swing the other way when I felt that it was not as upsetting as I had imagined, I finally gave in on Wednesday night and went for the big buzz.

I was growing a little weary of shedding hair like a Labrador retriever. They, like deciduous evergreen trees, seem to shed small amounts of fur (or leaves) constantly, and that is what my hair was doing earlier in the week.  It wasn’t coming out in clumps, thank heavens, but I was tired of running a comb lightly through my hair and seeing the fallout in the sink. 

After laying newspaper on the bathroom floor and setting up a kitchen stool, Lydia kindly took scissors to my already fairly short hair and cut it down to about an inch.  I always wondered what I would look like with a spike cut, but never had the guts to try it.  Now I know.  Are you ready?

Then she got out the borrowed clippers and started to shave away.  I was a bit nervous about the process, even though I knew cutting my skin was not apt to happen.  What I didn’t anticipate was that I would be left with a head full of stubble – and lots of it.  My hair really must be strong, because I thought that once I was shaved it would all finish falling out quickly.  Not so, but I’m not about to let anyone take a real razor to my head.

Here are a few things I have learned during this process:

1. Hair grows in different directions over different areas of your head, sometimes in swirls like a fingerprint, and each section has a grain.
2. It does NOT feel good to have someone swipe her hand over your buzz cut against the grain.  This actually sent what felt like little electric shocks all over my scalp. 
3. Sleeping on a cotton pillowcase with stubble is tricky.  The stubble catches in the cloth. Flannel is much easier. 
4. Lay your head gently on the pillow, or it will feel like the stubble is being pressed into the scalp, which is actually rather uncomfortable!
5. Much to my surprise, I have a pretty decently shaped head, which makes wearing scarves and hats so much nicer.  I also have a wig for special occasions, but still have some sorting out to do with it. (Sorry, no pictures to share of the total bare head – I don’t think I’m that brave, nor do I want to freak anyone out!)

Otherwise, things are going pretty well.  I am once again at the seven-day point after chemo, and, as before, I have found that the weekend after chemo is when I’m not feeling my best – but it certainly could be a lot worse.  I am so lucky to be having this treatment in the time of medications that help counteract the nastiest of side effects. There are even some treatments out there to prevent hair loss, but I’m just happy not to have to grapple with nausea!  So hair, finish falling out if you will, and we’ll see what the new spring growth brings and whether I adopt some very short cut for the long term.

Round 1 Follow-up

On Tuesday, I had to go back to the hospital for a shot of Neulasta, an immunity booster. Because the chemo tends to kill off all quickly dividing cells throughout the body, it affects the production of red and white blood cells as well. The white blood cells are the ones that fight infection and the Neulasta stimulates the production of a particularly important white blood cell for chemo patients. Originally the doctor had discussed my taking the shot home with me and giving it to myself on the day after chemo. The glitch, however, is that it is a $6,000 shot and insurance companies are not too keen on sending patients out with a prescription of that value. Although I could have had the prescription filled and taken it at home anyway, as I had planned to do, we discovered on Monday that it would have cost me a $3,700 a dose co-pay! So, it was without hesitation, and only some minor inconvenience and extra time that I decided to let the pros give me the shot in the treatment center. (In the arm, actually – at the treatment center!)

Thankfully, my side effects are pretty minimal. I am tired but not to the point of constantly lounging on the couch. Thankfully, the anti-nausea drugs are doing their work and I haven’t felt ill. Now that the Neulasta is kicking in, I am experiencing some bone ache, a fairly common side effect, for which I take Tylenol. So all in all, thus far, I’m doing pretty well with the once dreaded chemotherapy.

I also have great support at the moment. My trusty sidekick, Lydia, has been wonderful, and my brother, Robert, flew in yesterday afternoon to check in on me. He will be here for a few days and I hope to muster up the energy to show him a bit of this city, even if it’s only from the inside of the car. It’s great to have him here, although, of course, I wish I could have coaxed him to the land-locked Midwest under different circumstances!

Round 1

Monday was a busy day. It was my first day of chemotherapy and I was at the hospital for 11 hours! Way longer than I expected. I started at 8 a.m. with a blood draw on the 7th floor. They took 11 tubes of my blood – some for the regular blood panels and 8 extras because I’m participating in a study. Then it was down to the 3rd floor to Interventional Radiology for the port insertion, surgery performed under radiology imagery, using a local anesthesia and what is called conscious sedation. I was lucid throughout but relaxed, and I didn’t feel much as they put a quarter-sized drum, the port, under the skin of my chest and threaded a catheter between it and my jugular vein. With a port they can easily draw blood and infuse chemotherapy drugs without having to stick different veins each time. 

When I was finished there, it was back up to the 7th floor, where I met with my medical oncologist at 11:30 and then signed in across the hall at the cancer treatment center at 12:30. After a tour of the facility, we (my trusty best friend and I) sat through a 30-minute orientation before being shown to the “pod” where I was to get my chemo. The pod consists of 8 or so big reclining chairs and a couple of beds, where patients get their infusions. Clinical, but comfortable enough.

What I didn't expect was to get a 2 p.m. start on a chemo scheduled for 12:30. Next time there won’t be an orientation, and now I know to expect that the four and a half hour chemo infusion involves some additional front end time for the preparation of the medications, especially considering the astounding volume of patients they see on a daily basis. Although the chemo took a long time, it was not painful or disturbing in any way. Throughout the treatment, two nurses attend to the eight patients in the pod and are kept very busy. There are additional assistants and all of them gladly provide warm blankets, snacks and drinks as needed. One of the infusions had a good dose of Benadryl in it, so I spent a good bit of the time dozing blissfully. As the afternoon wore on, one after another of my pod mates finished up and left the area. Finally, a little after 7 p.m., we were the last to leave our pod and headed on our merry way, no worse for wear. Below is a view from the 7th floor in the late afternoon.

Time

Last night we switched the clocks back an hour, but someone forgot to tell the pets.  At 5:40 they started their usual morning assault.  I am their target – they seem to have learned to leave their other human alone.  Henry started off, meowing quietly at first from the safety of the hallway.  Sam, a 60-pound border collie mix, paced back and forth like a child needing to use the bathroom, toenails clicking persistently on the wooden floors.  I froze, remaining as still as could be in my bed, trying not to give any sign that I was aware of them.  One slight shift gave me away and they were both up on my bed, Henry forgetting about the threat of a spritz of water.  I got them to settle for a bit, but after 10 minutes, Henry started to walk across the pillows and onto the dresser and I knew it wouldn’t stop until I got up and let Sam out and gave them both a treat to hold them for a bit.  How to reset their clocks?  You would think I’d remember from year to year, but I don’t. 

So here I am, sitting in bed, wide-awake, pondering time.  Time has been moving at different speeds these past few months.  In August when the doctor discovered a lump in my breast, things moved at warp speed all the way up through my surgery in September.  Since then I have experienced the slow pace of waiting for results and appointments with new doctors to chart the course of further treatment.  The nearly 3 weeks since then have gone at a snail’s pace. 

I have had plenty of time to prepare, if anyone can really prepare, for chemotherapy.  I have spoken with people who have gone through it before me and, if nothing else, I have really learned this lesson: all breast cancers are NOT alike.  We hear so much about the stage of a cancer, but there are so many other elements to a diagnosis.  Just one factor, such as being HER2 positive, can totally separate you from those who share all the other aspects of your diagnosis.

When I was at the hospital last week for tests, I visited the resource center and picked up some very helpful literature on treatment and nutrition. I have been on the phone with my sister, who is a nurse, and on the Internet researching ports (unfortunately not fortified wines, but those quarter-sized objects that are inserted under the skin so you don’t have to have your veins constantly poked for chemo and taking blood).  I have read up on tips for coping with chemo, and discovered, not surprisingly, that everyone reacts differently to their treatment.  Another lesson learned: there is no universal truth about how one will respond to treatment.    

I have gone to a wig shop to investigate my options once I lose my hair. They suggested I ask my insurance company whether they would cover a “cranial prosthesis”.  I did.  My insurance company does not cover the cost of wigs, because it is not mandated by my state.  (Topic for another time: why should an American citizen living in one state have such different rights from citizens living in other states?)

I have gone through ups and downs over these three long weeks.  The downs: losing Maya; experiencing a major case of nerves about chemo; waiting for a free flu shot for nearly an hour at the county health clinic, only to run out of time before they could see me and other minor inconveniences.  The ups: getting my hair chopped very short and liking it, meeting up with friends for lunch, coffee and a movie; being taken out to dinner on Friday night by my dearest friend and having one of the best meals I can remember – lamb shoulder slowly braised with marjoram, fennel and honey, tossed with caramelized onions, wild shitake mushrooms and pappardelle noodles; and best of all, learning that my brother will fly here on Thursday to be with me.

And today, the day before chemo begins, there will be literal ups and downs. I am headed up on the roof to clean the gutters and safely back down when I’m done. I’ll take a quick look at a photography exhibit on frost flowers at the botanical garden, and tonight it’s off to the theater to see Kathleen Turner on stage in the play “High”.  So although I’ve gotten an earlier than hoped for start this morning, thanks to Sam and Henry, I have the feeling that this day will fly by. 

Then it will be the long anticipated tomorrow – a day that is also chock-full, this time with blood work at 8, port insertion at 9, seeing the doctor at 11:20 and finally facing chemotherapy at 12:30.  I hope to stare it in the eye, and let it know that it is not going to get the better of me! 

I Never Trained for a Marathon!

As we begin phase 2 of my treatment, I have to admit that I am suffering from a case of doctor visit fatigue.  I spent three and a half hours at the medical oncologists’ office on Tuesday, and another two at the radiation oncologist’s on Thursday.  I liked both doctors very much, and each was excellent at explaining my options, answering my long lists of questions, and making me feel as though they had all the time in the world to spend with me.  They were both delightful and had good senses of humor – something I always find helpful!  But after a bit my head was swimming with all the information and I was too tired after Thursday’s visit to write about it, although what I heard that day was not that complicated – at least compared to Tuesday’s round of information.  Instead I took it easy, and yesterday afternoon and evening I even indulged in stretching out on the couch and watching a couple of movies.  (My Life as a Dog and The Big Lebowski – an odd mix, I know, but both good in their own ways.)

Here’s the summary of the plan for phases 2, 3 and beyond:

Next Wednesday I go in for tests and lab work – blood work, an EKG and something called a MUGA scan.  Both the EKG and the MUGA scan look at the heart.  The EKG measures the electrical activity of the heart – or its rhythm.  The MUGA scan uses a radioactive substance injected into the bloodstream to take images of the heart in action.  It allows the doctors to evaluate the state of the heart’s ventricles.  Herceptin, which I will take because my cancer cells were HER2 positive, has a rare potential to cause heart damage. Fortunately this damage is reversible. The baseline MUGA scan of my heart function will allow them to keep an eye on my heart health throughout the yearlong treatment with herceptin.  I will have the scan again several times during the year.

 

I start chemotherapy on November 8th.  That morning they will insert a port under my skin so they don’t have to constantly stick needles into my veins.  This is a good thing, since I’m not always an easy “stick”.  I gave up donating blood years ago because it would take 45 minutes for them to get from me what others gave in 15!  After the port is in I will start the first of six treatments.  I will receive chemo once every three weeks, and, if all goes according to plan, I will receive my last treatment on February 21st.

Phase 3, radiation therapy, starts about 3 weeks after I’m done with chemo.  I will undergo six weeks of radiation and will receive it five days each week, Monday through Friday.  More on that when we get closer.

After that, I will continue on with Herceptin infusions into November, and will take the aromatase inhibitors to block estrogen and progesterone for five years.

Tiring just to read about it, isn’t it?  I started out with what I thought, based upon my early results, might be a short jog.  But now it has turned into something more like a marathon!    

Better Living Through Chemicals (aka the results from my visit with the medical oncologist)

Considering that I have cancer, the news since diagnosis has been relatively good: stage 1, no spread to the lymph nodes and the cancer cells were estrogen and progesterone receptor positive. (That may not sound good to you, but it is in a targeted treatment sort of way). The standard course of treatment for all of that would be radiation and hormone therapy for five years. Not too bad. 

The only wrench in my diagnosis was that I was three for three on the receptor front.  I also tested positive for another receptor called HER2 – the human epidermal growth factor receptor 2.  When HER2 is overproduced it promotes the growth of cancer cells.  It does not respond to the hormone therapy -- or radiation, for that matter.  HER2 positive cancer requires a more aggressive treatment.  So, despite much wishful thinking, I will be joining the ranks of those bound for chemotherapy.  The downsides are fatigue and hair loss.  The upsides, besides helping to keep further cancer at bay, are that they have much better drugs to combat nausea than they used to and I will save money for at least four months, probably more, since I will not need to pay for haircuts.  There is almost always some silver lining, if you look hard enough! 

I’m off to the radiation oncologist tomorrow, and will report on that visit, although radiation therapy won’t happen until the standard course of chemo is completed.