Category: Events

One of my coaches is telling me today was #5 of 12.  I saw that in my drawing as the mandala or circle is filling with images of my progression.  I love how this is evolving for me.  The static nature of image #1 and the movement through to today’s image which does not feel static to me at all.  P.S. I was not naked during the infusion…well, in the spirit of being honest, under my clothes and boots I was.

Another non blinking moment happened today.  I was sitting in the waiting room waiting for my lab appointment and a couple entered.  It’s so interesting to see how people do things, isn’t it?  Many, many times when a male is the patient and he is accompanied  by a female , she has the clipboard with the weekly nursing assessment form on it, and she proceeds to fill out the form.  So this couple fell into this process, she interrupted his cell phone call to ask if he’s had any constipation or diarrhea this week…does he feel any pain today…is he afraid he migh fall?  She had beautiful moca colored skin, royal blue pants and a light blue top on.  I loved the colors immediately.

I went into the lab, two vials filled with no hiccup on the port  draw and back into the waiting area by the fireplace awaiting my nurse escort to the chemo suite.  The woman mentioned above looked at me and said “I think I know you…how do I know you?”  Here I am with my head wrapped in a batik scarf, a purple watch cap over that, and a flap hat with great tassles on my head (so much for being incognito!) …I said something like “well if it is from a work memory, I’ve worked at the same place for 20 years”.  I told her where I worked and we figured out that I had done a workshop for teens in 1988 and she was on of the facilitators.  “We made masks. I still have mine.   It was and is to this day, very important to me.  I just wanted you to know.  I’m sorry to meet you here…”  Her partner was called in and the conversation ended with her holding her hand out to me in a very kind gesture.

I went back to chemo chair #5 (no view this time) and started doing work related stuff.  So cool that I can work (if I feel like it) during these treatments.  I don’t really like to admit that I’m a multi-tasker, which I am at times, but I do like that I don’t always have to use my earned time when treatments happen.  It’s tricky working on a lap top when I’m getting scanned or under anesthesia, but chemo infusions of this nature are another story.

I took out my pad once the chemo part of the drip started and the benadryl effects were wearing off  and the above image just poured out with no thought on my part.  This image enchanted me from the first mark I made.  So as I was drawing and rocking out with my music, the woman mentioned above came over and tapped me ever so softly on the shoulder and asked if I minded if she visited with me for a few minutes.  I unplugged myself and closed my pad to give her respectful attention.  I felt blessed by the overture.  Here’s a synopsis of what she said:

I am so sorry that I’m seeing you here after 22 years but at the same time I feel like it is an opportunity to tell you something that I may never have had the chance to tell you.  I was always the white sheep in my black family.  I didn’t feel like I looked like either of my parents, and my natural talents were from somewhere else apparently.  It was an ok childhood, but I was unsettled.  When I made my mask with the teenagers that day, I saw my face for the first time in 3-D.  I saw my father here (she pointed to her chin and her nose), my mother here (her eyes), my father again here (her forehead).  It was so profound it took my breath away.  I had to excuse myself for a minute or two to gain composure.  For the first time, what was I, late 20’s?, I felt that I belonged to these people on a very deep level.

I still have the mask hanging in my house.  When I have days that I just don’t feel like I fit, it reminds me that I belong to that family.  You were just so postive for the children in the workshop, and I benefitted in a way I never imagined I would.  I wanted to thank you.

We spoke briefly about how amazing mask making can be and about the fact that she has been with her husband for 30 years now.  A few minutes later she said “Can I get you anything?  Some tea or something from the kitchen?”  and I graciously declined, pointing to my water and thanking her for taking the time to visit with me.  She got up and touched my shoulder again and joined her husband at chair #1.

This infusion went without a hitch.  I was struck by how fast the time went and I was out of there in 3 hours flat.  The nurses marveled each time the I.V. timer went off, and checked their watches to be sure 15 minutes had elapsed for whatever drip.  Sure enough the timer was working correctly.  It really flew.  I completed my drawing and it was time to have the port access removed.

I went to work and attended staff meeting and a meeting with a colleague in person.  I’d planned to go home to rest and work the rest of the afternoon there, and kept to the plan.   When I got home my eyes were really in need of shutting.  The katz were very pleased to find me in bed at 1:30 or so.  I slept for maybe 1/2 hour and felt rested, and just hung out with the felines for another 1/2 hour before getting back to work.

I have noticed that I may be irritable on occasion.  Skin’s dry. I am chewing on these great ginger chews (the only ginger stuff I actually enjoy).  I am eating more frequent, smaller bits and just trying to be aware of my gut.   I had a little headache going into chemo, but drank more and ate some and it has subsided.  I feel, like other infusions, that I’m aware of the drug(s) going through my system.  Not uncomfortable, just more aware of the path through my body than usual.  I feel like I’m dodging the side effect radar.  If I stay low to the ground and speak softly, maybe I won’t be detected.

I am humbled and so grateful that I WAS detected today by someone who had a wonderful gift for me.

Yea today is Round 2 Cycle 4 Day 1.  These numbers are becoming less of a focus for me.   With the eye on the ball, we are keeping our stride.  Cheerleaders on the sidelines are reminding me we are 1/3 the way through this portion, and that is WONDERFUL to hear!  (thank you for carrying that part so I don’t feel the need to) The infusion (or invasion as  brother M calls it) went fine.  We have a regular nurse who is just wonderful.  Actually they all are, but K is our nurse and is just the right match for us.

Technical information about today: the waiting room was PACKED early this am when I galloped in.  I get comments on my boots at least once each visit.  I usually go to the lab first to access the port and do the blood draw for the labs that have to be read before infusions begin.  Today K came and took me back to my chair (another chair with a beautiful view of the fields and gardens behind the center – not all the chairs have views) and accessed the port and did the draws right there.  All is well in my blood.  As you may recall from previous entries, sometimes there is good blood return when the port is accessed (this is crucial to see that the port is working properly), and sometimes there is blood return but not enough for the labs.  You may recall that sometimes we have to do creative positioning.  Today we did that.  If anyone who ever gets a port reads this, please have faith.  Skilled nurses who know about ports know it’s about positioning much of the time.   You will come to have confidence in knowing your port well.  We reclined the chair and I put my hand behind my head this time.  It worked like a charm.  The benadryl and zofran were the first drips after the labs came back.  Then the Taxol.  4 hours later I was on my feet.

A long side note:  4 hours at the center is not a long time.  My particular regime is to get labs drawn which takes about 15 minutes if we succeed accessing the port quickly.  I get a nursing assessment (weight, vitals, symptom check, medication check) and then we wait for the lab results which usually takes 15 to 30 minutes.  (I’m in the chair by this point).  Then they start the hydrating drip, and the benadryl (a very small bag) and then a flush and the antinausea med (another small bag).  Then 1/2 hour wait.  THEN the Taxol (1 hour).  Once that’s all done the port gets flushed so it does not get clots and I’m outta there.  There was a man next to me who started when I did and was on basically the same schedule, however after I was leaving he was starting a 3 hour drip and had another med after that one.  There are so many cancers and chemo regimes.  I am grateful, in a funny way, to have the cancer with relatively short treatment episodes.

The chemo room is completely open with curtains for semi-privacy when needed or requested.  Conversations are fairly open.  I am struck by how many people just starting out ask which of the 3-4 antinausea meds that they have been prescribed to start with.  It seems that everyone gets told to just try them out.  When I started out, I heard “stay ahead of the nausea” and asked “how do you know if you are even experiencing nausea if you are taking meds before you feel it?”  “how do you know which one will work?”  I heard “when you feel nauseous just take one and see if it helps…if it doesn’t help, try another.”  and asked “how do I stay ahead of it if I am waiting to feel it and it comes on strong?”  If I were going to give advice at this point, it would be to think about what feels right to you.  I went with something else as my first line of defense.  (acupuncture and herbs and careful eating)  This is because I hate taking medications.  I will avoid it whenever I can.  B had me take the whole arsenal on the first day with AC (after I was completely empty from diarrhea and was just moaning with nausea) he couldn’t stand it any more.  I eased back a lot and chose not to do any steroids.  I also decided on the one drug I thought seemed to be the least harmful to me. I can be really stubborn in spite of myself, but this is what I chose.   Remember when I asked what would you rather be nauseous or constipated?  It’s a serious thing to consider.   I have not felt nauseous during this phase of treatment so far.

I could not do any blogging during the infusion because of technical difficulties…alas.  SO I worked on knitting a great colorful flap hat and did some other stuff instead.  My drawing is not quite finished, so if you want to see the 4th panel of that drawing you might want to check back some time in the next day or two.

SO this is not what I want to spend time on.  I feel I have to share an “if you blink you might miss something like this” story.

I left the center and had a couple errands to do.  You know, bank, book store, gas up the car.  I was about to exit the gas station and on my second look to the left a very small, older woman was trying to catch my eye.  I opened my window (mind you, I had my glasses and a crazy hat pulled down over my ears) and here’s what transpired:

“Could you give me a ride to town?  If you drop me off at W….  street I can walk the rest of the way.”

My immediate thought and comment was “Absolutely” and I made room for her in the front seat.  My second thought as we were driving was “what reason would a person not do this?”  I came up with a bunch of reasons and let them go as my passenger told me about some important things in her 77 years.

“You know I left my house this morning to do these important errands and when I got to the gas station (about a mile from her home) I stuck out my thumb and this really nice man picked me up in his truck and you know what?  He took me right to the DOOR of the place I needed to go.”

She told me of her 26 year marriage and the death of her husband 10 years ago.  She showed me the picture on her driver’s license and said how happy she was that they were going to use the same one for the renewed license.  She had a perfect crescent smile, toothless, and the biggest brightest brown smiley eyes I have seen.  Her wrinkles were like webs of light supporting the joyful expression on her face.  As we laughed, she reached to touch my hand that was on the stick shift, two times.  A gentle feathery touch.

She mentioned her road name at the start of our trip and I took her to her doorstep, 3 1/2 miles from our starting point.  As she got out she said because of the arthuritis in her spine, it takes her a while to get out of cars…she handed me the papers from her errands and got out.  She looked at me and took a great breath and said “I hope you are having a happy new year even though it hasn’t started yet.  You are going to have many, many, many happy new years!”  She took her papers, shut the door and continued talking all the way to her door (maybe 4 yards away).  She turned and smiled at me and blew me a kiss  and said “your first kiss for the new year”. 

I smiled the whole way home and could not wait to tell the story.

I feel great emotionally.  I feel really close to great physically.  I met an angel today.

I especially like this rendition of Another Day In Paradise by Phil Collins because I like what he is doing with his hair.  Don’t you?

9:00 am: I’m having my infusion right now.  It’s going without a hitch.  Blood draw was immediate, they took enough blood, labs looked good, 25 mg of benadryl is the standing order now instead of 50 mg.  I may set a record for getting out of here in less than 3 hours.  B is home with a terrible head cold and apparently he called me a few minutes ago.   I didn’t get the call because I have my phone on vibrate and it’s in the left pocket of the shirt I’m wearing.  I have no sensation on my left side, so I could not feel it vibrate.

I can get up to go to the bathroom during infusions.  I just have to unplug the IV machine and drag the IV tree with me.  As I was doing that today I had the thought I have occasionally:  this is really happening.  When I’ve seen people dragging their IV bags around with them in hospital or movies, they usually look very weary of the road, just wiped out.   (how’s that for stereotyping??)   Here I am with my cowboy boots, black pants, B’s flannel shirt and a Santa hat, feeling tall and unfrail,  walking to the loo with my IV tree.  Surreal.

I went snowshoeing with D yesterday.  It was perfect.  A beautiful day, a bit chilly with the wind, but it felt so good to get out there.  When she called we were both talking about having things we needed to do.  Taking an hour out of a day that’s full with I WANNADOs can be a hard thing to do.  But that hour was more than an hour of my time.  It was time in the fresh air, moving my body, chatting with a good loving friend, laughing, throwing the ball for the dogs, smelling the winter air, living life fully.  I took my poles with me and my arm felt really good with the movements.  I think I can make 2/3 of an angel wing on that side now.  Thanks D for the walk and for always meeting me out there, even when we go at o’dark:30.

6:15 pm:  All’s well.  I’m thrilled about this.  I’m working a bit and getting excited for Christmas.  I plan to work in the AM tomorrow and home to rest and work if I can…trying to be careful.  B scanned the photo and I put it up on the Uncle Charlie entry if anyone wants to go back to see it.  I think we all could benefit from taking that posture from time to time.  I miss him.

Kids found their OWN rides tonight to hockey and bowling…they are developing some independence.  SO B and I are home alone (well, the katz and fish are here too).  Aaaaaaaaaaaaaaaaaaaahhhhhhhhhhhhhhhhhhh.

Well cycle 2 has started.  I asked for rides this time just because I wasn’t sure about the benadryl affect.  SO an angel drove me all over creation to do errands and then dropped me off at the cancer center.  The port access went smoothly even with a new nurse doing it.  I just had her recline my chair and she filled the vials no problem.  The problem that arose, however, was that  one lab order had not reached her in time, and they had to take one more vial when I was out at the chemo chair and we had to wait for those results before proceeding.  Waiting…waiting…waiting.  But it gave time for me to talk with the oncologist.  I asked if she could split the dose of benadryl in half.  She was very amenable and changed the order.  It was much easier to drink tea, draw and write with only 25 mg of that drug in my system.  It was so easy to get it reduced, I don’t really know why they start with 50 mgs.  I suspect dealing with a groggy patient is easier than dealing with an allergic reaction to Taxol.

I met someone who is the American Cancer Society Patient Navigator who works at the cancer center.  She’s a Nurse Practitioner and is the liaison that I think we were missing at the start of all this.  She basically can hook us up with whatever we need.  She has tons of information from the cancer society about funds and services available to help cancer patients.  She is a delightful woman.  She turned me on to Casting for Recovery which provides retreats for breast cancer women free of charge.  It’s a weekend of fly fishing instruction and interaction with others who’ve been there.  If you’re interested in learning more or donating to this cause, you can go to www.castingforrecovery.org.  I’m definitely looking into this.  I hope to be able to do this this summer.

The infusion went fine once we could get started.   The whole thing took a lot longer than usual because of the lab glitch, but I was keeping myself occupied.  I was asked to show some of my artwork to the nurses.  I called another angel for a ride home.  The katz and I napped and I was grateful for the crock-pot that was simmering while I slept.  Again I was careful about what I ate.  I drank a lot of water before and after the infusion and around 3 this morning I awoke with a bursting bladder.  When I woke I had some feeling in my intestines that I might categorize as mild cramps.  I was also really thirsty.  It wasn’t nausea that I was feeling.  I emptied my bladder and drank a bunch of water and when I lay back down it felt much better.

Today, day 2, I’ve felt well.  Small snacks throughout the day helped. I worked in the morning, had acupuncture mid day and worked from home in the afternoon.  A friend is bringing chinese food for us tonight and yesterday when we spoke about preferences I was really tempted to have her order some hot and sour soup…but wanted to be careful.  I told her I’d give her a gut update today.  (Gupdate for short.)  This afternoon’s gupdate was: BRING THE SOUP!

I find that when I’m asked how I am feeling, that I cautiously say “good” .  I do feel good.  We’ll see how I feel after the soup though!

The snowfall on Wednesday was beautiful.  We had about 8 inches at our house I think.  We have been really busy.   I just dropped B and E off with 7 others who are going to go winter camping in the foothills of Saddleback Mountain.  Between getting to work and our other commitments, we have been stumbling around insulite pads, insulated sleeping bags, gorp and snowshoes.  B and E have  been putting together pulks, making waterbottle necklaces out of old padding and duct tape and running around in their long underwear.  I love camping.  Unfortunately I don’t think my body can manufacture the hutspa to keep itself warm enough even if I put the campfire inside my snowsuit.  (This, of course, is totally not counting the hot flash syndrome…) I was freezing just standing outside taking pictures of them all loading the gear. Right now it’s 20 degrees at our house and the wind is a howlin’.  I’ll put on some venison stew today so when they get home tomorrow afternoon, they will be happy boys.

Instead of camping, I get to be the chauffeur for the 15 year old girl with the very busy social life this weekend.  That’s ok for me too.  I love that she is involved in her life and has such sweet friends to be with.  I think the distractions are important at this point.  She checks in with me regularly.  She tells me I’m cute, especially when I rip my hat off during a hot flash.  She snuggles with me just at the right times.  We are AOK.

I have been able to get to work each day.  I’m meeting with staff and am getting a sense of the things that I can get accomplished on the short term, since the longer term is more difficult to plan for right now.  I am trying to be careful about over committing and not being able to fulfill my promises.  I’m being cautious about my availability because I just don’t know how the chemo will affect me over time.  It’s been great to get my mind focused on other things and feel like I’m doing normal stuff.  I’ve felt energy and no discomfort all week.

We met with our radiologist yesterday… the first male doc on the team.  He is really a gentle spirit.   He said that if more than 4 nodes are involved, my chances of staying cancer free essentially doubled if I go forth with radiation.  No brainer.  We went into the visit with this expectation so there was minimal disappointment for me.   Don’t get me wrong, I would have loved to hear “no radiation necessary”.  But this is NOT realistic or wise in my case.  At this point it’s more of the pickin’ em up and puttin’ em down sort of thing that B is teaching me so well.  This G.O. has had to learn that there is optimism and then there is fooling myself.   There IS an end to the treatments, it’s just not this week.  I think my idea in a much earlier entry was that springtime will be the time for new growth and energy.

Here’s what I took from the meeting:  Two weeks after chemo is over we are to call and make an appointment for a simulation.  We learned that when one gets radiation, the majority of the time is spent on positioning.  In order to keep the subsequent visits short and the treatment accurate, they make a pillow of sorts with an impression for me to put myself into each time.  This is like an hour long process but only has to happen once.   I will be positioned with my hands behind my head.   They will take a scan of the area so that the radiologist can make the plan of how much radiation, where to aim the beams and what shape the beams should take.   There will be some radiation to the area under my arm as well as on my shoulder as there are nodes up there.  They will tatoo me with dots the size of a freckle at certain points, and this will allow me to be in the right position and the machine to be lined up consistently each time.    (I wonder if that’s the time to ask the tatoo artist for his/her portfolio?  Maybe I could get a two for one deal or something.) It will apparently be like getting a sunburn over time.  This occurs 5 days a week over many weeks.  Apparently the actual radiation time is something like 5 minutes once everything gets set up.  The doc encouraged me to bring along aloe  gel to put on right after the treatments.  He said that treatments will not hurt and I will feel the same leaving as I did entering, but over time the biggest reactions to radiation in this area are fatigue, skin stuff and maybe throat discomfort.  I guess bringing the SPF 50 might be counter productive.

He examined the incision and encouraged more scar massage and aloe to keep the area as stretchy and supple as possible as well as to counteract the chemo affect on my skin.  You know, since I’m inexperienced at surgeries, I had no idea about the care and feeding of an incision other than the initial keep it dry phase.  Now I have to keep it MOIST.  My skin is dry enough in winter.  With the help of chemo and radiation I may look like a raisinette in short order.  The biggest take away for me from that meeting was my feeling about the radiologist.  He’s a keeper.  There was something about him that reminded me of a sweet friend of mine.

So I want to write briefly about massaging a mastectomy scar. I just peeled away the last of the seri strips from the end of the incision near where the nodes were taken.  That stuff is amazing.  I remember the days when we’d get stitches and walk out with the stitches showing.  Seri strips are such a good idea, I wish I invented them.  It is a bizarre feeling that there is no sensation on the scar.  I still have some residual adhesive around the area because I’m hesitant to scrub it off because I cannot gauge how vigorously to scrub.  OK, probably more than anyone wants to know, but no one told me this stuff.  I’m a very sensory oriented being, so it fascinates me.  I’m sure there have been numerous occasions when my family heard “Oh WOW!” from the bathroom and just didn’t want to know what was going on in there.  So the feeling I DO get when I massage the scar is not physical.  I guess I would call it a nurturing feeling.   Like building  a relationship with this new body.