It Never Rains, But It Pours

After months of extremely dry conditions, we have had an incredible amount of rain in the last three days.  Today, the day before Thanksgiving has been grey and wet.  Tonight, the rain is coming down in buckets and is accompanied by thunder and lightening as well.  At one point, the local tornado warning sirens went off.  After a few moments of debate the dog, cat, my housemate and I headed to the basement. We tuned in to a local TV station for an update and discovered, thankfully, that the weatherman didn’t understand why there were sirens going off in our county.  The real tornado warning was for locations two counties southwest of us.  I relaxed a bit upon hearing that news. It’s always unnerving to have the sirens go off, especially in the dark, but I found it particularly unsettling to hear them six days before the start of December.  Although there have been late fall and winter tornados in this region before, they are, thankfully, a rare occurrence.

In addition to long dry spells in the weather, I can go a very long time without an out-of-town visitor.  We may live in the city known as the Gateway to the West, but very few friends or family members pass through here.  Yet in the past two weeks, we have had three visitors: my brother and a couple of friends.  Robert came on Veterans’ Day. Kay, who used to live here, is a great friend and travel companion (Australia - 2000 and Spain - 2004).  She drove down from Chicago last Friday and spent the evening catching up with us, and we with her.  Another dear friend, Julie, took us totally by surprise, calling on Monday to say that she was in town and would love to drop by.  She came over for a couple of hours that very evening.  

It was great to see everyone, but I must say that, like the rain, I would love to spread these visits out a bit more evenly over the course of the year.  It may be months before another out-of-town friend turns up!  However, I can’t, or shouldn’t, complain.  It is far better to have three visits in short order than none at all.  On this, the eve of Thanksgiving, I’m grateful for both the needed rain and the longed-for friends and family who turn up from time to time!  

Aaahhh, That's Better!

What a difference a day makes!  I started to feel better yesterday after a bit of a shaky start.  I called Shannon, my nurse, and consulted with her on a number of issues.  She provided reassurance and gave me some good direction and advice.  With her backing, I finally gave in and took some over-the-counter meds to help ease some lingering discomfort.  I had also discovered my own little secret potion and sipped on a regular (yes, the real deal with sugar!) 7-Up.  Then, I took an hour-long nap in the late morning and awoke with enough energy to drive myself to the office for nearly 3 hours of work in the afternoon. 

Although I felt a bit other-worldly and like I was treading water in semi-solidified gelatin, I managed to put one foot in front of the other and was actually somewhat productive – although I do feel I need to double check what I did yesterday before feeling totally satisfied with that statement.  Although I had cut out most of my caffeine, Shannon said that I shouldn’t give it up altogether since my body was used to it and it might give me an energy boost.  I indulged in a mid-afternoon soda, which did seem to pick me up a bit more.  

I left work a little after 4:00 so I wouldn’t tire myself out too much, particularly since last night was the monthly meeting of my photography club.  I wanted to save some energy so I could attend long enough to hear the speaker, who is a friend of mine.  I was responsible for connecting her with the program committee, so I felt more than just an interest in her talk – I felt somewhat responsible to both parties.  An amateur astronomer, Ann gave a great talk on photographing the night skies and other interesting astronomical phenomenon and she was very well received.  I’m happy that I was up for it and made the effort to be there!

Although I’m feeling better, it still seems to take the whole of the morning for me to get up to a reasonable speed.  I woke up fairly early today, had a bit of tea and toast, actually rode the stationary bicycle for ten minutes – a pretty major accomplishment, and one the books say should beget more energy, had a soak in the tub, gently washed my hair (which is still in place), read e-mail and have worked on this piece.  Not a very ambitious series of events, but progress.  Now, fingers-crossed, and with some knocking on wood, I’m gearing up for another few hours in the office this afternoon.  So, off I go to fix a little lunch, gather my supplies and sally forth into the world of commerce.  

Round 1, Take 3

Okay, I spoke a little too soon.  Whether it was the running around with Robert on Friday, or the chemicals catching up with me, or eating the wrong sorts of things – or all of the above, I have to be honest and say that I have felt pretty puny since Saturday.  I had no energy over the weekend, little interest in food (but still no nausea, thank heavens), grumbly guts, and a general feeling of malaise.  My tongue is weird, and the pads on my hands are raw, and sensitive to hot water, like a burn.  I’m really not fond of feeling punky and listless, and am tired of sitting on my bum for 3 solid days.  It’s been a bit hard to get comfortable and I have little ability to concentrate on books, puzzles, or other pleasant distractions at the moment. 

So, in an effort to make the most of a less than ideal situation, I decided that a change of scene and substrate might do me some good.  I have moved operations from the couch in the living room to my bedroom.  It is on the southwest side of the house, and the sun is pouring in.  It’s bright and cheery with its Caribbean colors and artwork and, even though I have an aversion to being in bed unless I’m sleeping or am really sick, I’m just perching atop it, so it doesn’t really feel like a sick bed.  I have my laptop, some good pillows for sitting up, a warm throw with a cat on it – literally – and a dog nearby.  Although I don’t feel on top of the world, I’m settling in and discovering how to make myself as comfortable as possible. I think the switch, for now at least, may help relieve some of the tightness and achiness I’ve experienced over the past couple of days, when I was literally curled up, a little too tightly perhaps, on the couch.

As each day passes, I expect to get better at this, and hope that I'll have figured out the best way to cope with all these little nuisances by the time all six rounds of chemotherapy are over!  In the meantime, I remind myself that things could be a lot worse.  I must admit that I am most grateful that they are not!

The Recovery Room

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!