E and I were going out to take the recycling to the transfer station this morning. As we approached the end of our driveway, I saw in the dusting of snow two very distinct and large hearts which were made by someone evidently turning around in our driveway. I stopped the car at the same time E said “hey do you see those hearts?” We looked and smiled and as we pulled out of the driveway E said “Someone loves us.”
Thank you, thank you for talking with me about mortality and life and living and dying. It is always enriching to me to learn how others grapple with the unknown. Reflecting upon the honor of being at births and deaths always gives me a warm heart. I am awed by these experiences. I firmly believe that having midwives at both transitions is as it should be. Having been in that pseudo role on a few occasions has enriched my spirit.
Many many moons ago I was given a passage that I committed to memory immediately. I wrote it, I painted it, I wrote it again. I recited it. Long days have passed since then, and I found myself reciting it to B during our preslumber time the other night. I think I remember who gave it to me and will ask her if it was she the next time we speak. However, I had no source. Then I attempted to write it down here and saved it as a draft. I went into the shower for a long hang out in the steam and warm, and remembered more.
And so today, I opened the draft up to find the source and the exact passage. Some Little Sisyphus must have snuck in. My provider of so much. We were both fairly impressed at how close my ‘draft’ was to the actual wording. (It amazes me that my space cadette brain holds on to the gems no matter how garbled it gets with all the other stuff. Don’t get me started on all the numbers I retain. GEEZ.)
Anyway, here is my absolute most favorite passage of all time. It is so fitting at this point and time in our life lesson.
“Peach Blossom Spring”“Ah, how short a time it is that we are here! Why then not set our hearts at rest, ceasing to trouble whether we remain or go? What boots it to wear out the soul with anxious thoughts? I want not wealth; I want not power: heaven is beyond my hopes. Then let me stroll through the bright hours as they pass, in my garden among my flowers, or I will mount the hill and sing my song, or weave my verse beside the limpid brook. Thus will I work out my allotted span, content with the appointments of Fate, my spirit free from care.”T`ao Ch`ien (A.D. 365-427)
So I have heard that it is a tease seeing only one or two of the panels to this drawing and not the whole piece. Ah, a little temptation on my part. Tune in next time! It is a work in process. My art has always been very personal, and not really much for public consumption, so sharing it in this venue is really new for me. Yea, you’ll have to wait to see the whole thing.
Infusion day angel story #3. It’s interesting, as the panels on my drawing became more fluid, I began observing the angels. Today I met someone during treatment who I’d spoken to briefly a few visits ago. She said that she tried to find me last week, but I was in and out like a flash. This week she came. “I just wanted to say that you inspired me. By seeing you drawing here, I’ve taken out my artwork and have made a commitment to make the time for myself this year. It’s not easy to take that time. I would love to bring it in for some consultation next week. I’m doing a portrait for a friend and the shadows are giving me trouble…”
We had a long conversation about art and other common interests. Part of what makes her an angel is the fact that she has a young downs syndrome child who has battled cancer. She also has 3 other children and a husband among other things. We both agreed that we needed wives. I hardly felt that I needed one as much as she, but if she was ordering one I wanted one too. She’s so right. Carving the time is what it takes. I’d not drawn for several years before my diagnosis last summer. Taking the time to read that book on Sunday is another example. If I blink I’ll miss it. Who cares about the bedroom walls. Meeting her and talking about art and the things that make us who we are was inspiring to me. Another gift on infusion day. It seems that for all these angels in my life they are considering me one in theirs. How sweet is that.
I’m not sure why these past two infusions have seemed to fly by. I bring my ipod and that’s a great thing. One ear plugged in to music I love and some music my loved ones have shared with me, and one ear ready for conversation from the really caring staff. I just make a point of unplugging if I find someone talking to me. I also love doing the panel of the day in my drawing. I do some work-work before the benadryl hits. I’ve got plenty of stuff to keep me engaged. That and a nice cup of tea and I’m really all set. The 3 hours or so passes very quickly. If any of the readers of this blog are interested in seeing the center or what the infusion is like, you are welcome to contact me and we might be able to set something up for one of my remaining infusions. I’m not finding that I NEED company (obviously) this round, but if you’re curious, seize the moment! Don’t blink or you might miss it.
I did meet with our oncologist today, more of a recorded meeting than our casual conversations, however it was casual as well. I asked about cancer markers in blood. Someone had mentioned them to me, but I never heard any of my providers talking about them. She said that for breast cancer, the cancer markers are definitely not the best thing to go by as an early indicator of cancer. (For prostate cancer, liver cancer and others the cancer markers are DEFINITELY helpful.) She used my early labs for an example. At the start of all this when the cancer was growing inside me the “CA 27 2” result was a 26.1 and the expected value is <=38. The “CA 19-9” result was 4 and the expected value is <55. Because of this, my cancer markers “were not specific for malignancy” but there was a very malignant tumor quite alive and thriving inside me. This, apparently, is typical for some breast cancer, and thus would not give us a sense that there was a problem. We will check them out again sometime for comparison.
We spoke about the trajectory from here on. I guess I’m half way through. At infusion 10 there will be a PA visit and at 12 I will meet with our oncologist again. We spoke about how we will keep track of me, and how too many scans mean too much radiation, and this is not good either, so she will most likely use CT scans of my chest, not whole body scans. She indicated that if there is a reoccurrence the best place would be in my chest wall or my other breast because it would be breast cancer (more managable than some other areas and cancers). She said something that caused me to pause, about my cancer, the size of the legion and the node activity that puts me in a “not necessarily cured” catagory like some. So she wants to watch me carefully. She said there’s just not enough evidence that says more scans are helpful. I appreciate her caution. She did suggest scans every 6 months for 1 or 2 years and then maybe yearly and did indicate that right now the marker is still 5 years out for decreasing observation from oncology. I would still work with our surgeon who is a breast specialist for follow up after that.
I have put a link to the song Landslide by Stevie Nicks here. It has always been a favorite song of mine. It felt particularly pertinent to me today because when she wrote it in the early 70’s she was at a decision making point in her life and I think I recall her saying something about knocking her ego down a peg. I can get so wrapped up in the shiny stuff, in the G.O., to the point where I will NOT give the reality of a life threatening disease more than a minute of thought. I can have “tallitude” as my brother calls it, and this feels great. I feel great in my cowgirl boots. But I like the idea of coming down a peg or two just so that I don’t miss the moment. Lindsey Buckingham’s acoustic guitar is such a support to Stevie’s voice. I looked at a bunch of recordings, some with slide shows of Stevie as a very young woman and others like this one, later in her life. I chose this one because I can just relate to the humility I see in her, I suppose. I think about my relationship with B and how he has stuck by me as several landslides have brought me down during our 20+ years. I know why he has stuck with me out here on the east coast. It’s really just a love story.
I know one minute I’m saying I don’t dwell on this too much. I think I mean I don’t let it get me down. Every once in a while I do think about not being around. But when I think about my own death, it has never been something I have felt that is in my control. Oh, other than the fact that I can drive carefully, take care of my body and make low risk choices to help this body endure life. It is weird thinking about not existing any more, but I won’t exist so it won’t be my problem. I just wish that we all could go when we have fully lived our lives and feel in agreement with our tired bodies that it’s time to go. Like Pop and Uncle Charlie seemed to do. I don’t think either of them WANTED to go, but they were ready to go. When my sweet friend Scott died at 42 of a brain tumor, I was certainly not ready to let him go, but he went with grace, never the less. Any one who wants to engage in this topic, PLEASE chime in any time. I’m DYING to talk about it with someone. (pun entirely intended) Maybe Morticia Adams is out there somewhere. She’d love to talk about it.
I just want to say that my life long friend M called to tell me that her biopsy was negative. I had encouraged her to get a specialist involved as she was feeling concerned about something. I was SO happy to hear the results, the joy went deep. The relief in her voice was a pleasure to hear. Thanks, M, for calling me with the results so soon! You are part of my foundation after 40+ years of love.
Thank you for your endurance, readers. It is so comforting to know you are there.
Here’s a tip with copyright permission from a loving cousin and diehard reader of this blog:
For Dry Skin:
Safflower Oil and Olive Oil (virgin) have omega and essential oils but Safflower is orderless, with vitamin E, and you won’t smell like a salad…..I make sure my hands are clean, I put about a dime size worth of safflower oil in my palm, fill my hand with running water wet down my entire face with the greasy water (feels awesome) then wash with mild face lotion while that is still on my face, rinse.
By doing this the skin is absorbing oil while you’re washing away valuable but dirty oil off you face. I’m telling you I have had such an easy time of dry skin this winter because of Safflower oil. I did use Olive Oil extra virgin but it is extremely smelly and safflower has the omega a E just as much as olive oil. I don’t have the super dry pulling of the skin after I wash anymore before applying lotion. It buys you time before you moisturize but in a natural way. Hope it helps! Actually lately my hands and legs are enough to make an alligator jealous and now I put safflower oil on my hands and legs before I go in the shower. Caution, always apply BEFORE entering so no residuals are around to make you slip! Hope this helps,
Love you too much,
C
P.S. It hasn’t eliminated my wrinkles unfortunately
I marvel at whether what my family experiences in my behavior is actually chemo affect or just me. I don’t know if there is a way to tell. It’s so easy to blame the chemo for the crap. (as IF I didn’t have crap before all of this)
As far as the general body stuff, you all know that the dryness is still the biggest thing for me. My family benefits on occasion because I MAY just offer to moisten their dessicated epidermis before they shed like a snake. One has to catch me at a very generous moment as I quickly get bored with the task of massaging others. But when I do, you never know, you might get a good long one out of me. Rare, but possible.
My behavior is under the microscope at times. Perhaps those who love me are so sensitive to the changing tides, concerned for my well being, or whatever. I don’t know how much of this behavior is genuinely me (I suspect 95%). It is so great when I feel normal because life is normal and the “demons” as A puts it, are not in everyone’s face. It gives my kids and B no reason to consider me sick. On one hand, it’s great when I hound my kids about helping out or say no to something they’d prefer a yes to. It means I have enough energy to engage, so it feels great/normal for me, but not necessarily great for them of course. That’s happening more and more of late, I’m feeling more active in the parenting role. But I wonder some times if my clearly “affected” days eclipse the days when I am highly functional and normal. You know the looks everyone gives each other when the pink elephant walks into the room? I don’t want that to happen. YUK. But if they look at each other with “oh brother!” when I crack one of my jokes, or make a face or giggle when I probably shouldn’t…now that’s me.
There are days when people say “I can’t believe you’re doing this” (like shoveling the 16 ” of snow we received last Saturday night with B who turns everything into a workout, or hiking the mountain in the snow on New Year’s Day, or going to work, or preparing food with energy and love, or staying up past 7:30pm). Observing me on these days may be confusing or concerning for some. I don’t know. Similarly, observing me cracking the whip with my kids (can you even IMAGINE that??) or getting irritated when I’m tired and should be in bed, could produce the whiplash I and others referred to in previous entries. Perhaps when I’m doing or looking like something that is not pure G.O. it reminds them that I’m human like everyone else. Darn it anyway. As far as I can recall, I have always gone to bed early and gotten cranky when I was tired.
I vacillate between laughing about chemo brain space cadetism and defensiveness about the assumption that whatever I am doing/experiencing must be chemo affect. I suspect that it will all come out in the wash and sometime next summer when I’m spazing out somewhere, dancing in the middle of a crowded sidewalk, singing a goofy song, we’ll all have a better view of me sans chemo. I will have NO alibi and for that matter, neither will anyone who is seen with me.
Today is Sunday. I stayed home yesterday like a good girl, but I was busy as usual. Today I also stayed home. As B was leaving to pick E up from a friend’s house to take him to jujitsu, I mentioned a book that A told me I had to read before the end of January when it was due back at the library. B said “Why don’t you just read the book? You were all busy yesterday and crashed last night. Why don’t you really just sit and read this morning?” He walked out into the cold morning and A was soundly sleeping. I started by doing my favorite thing, I made tea and got the fires rolling. I sat in the chair and I provided a lap for our girlie cat who is JUST learning after 3 years that we are more than just can openers, and read the book. The whole book. Actually B and E arrived back home literally as I was on the last page. A came downstairs just a short while after this. It was lunch time and I hadn’t raised a hand doing chores or finishing the paint job on the window in our bedroom.
This is pertinent here for several reasons. The first is clearly on the subject of is it me or is it chemo? This could not have happened on the AC chemo combination. I could’t read two pages at one sitting. In fact before chemo it was a rare thing to read 200 pages in a day. The next reason has to do with living with teenagers. The book is among one of the best coming of age books I’ve read. It’s called the perks of being a wallflower by stephen chbosky (1999). As we are dealing with my medical business, our children are dealing with adolescence. What a bum rap for them. They have managed really well in my opinion, but it’s got to suck at times.
Both are maintaining their position on the high honor roll, both are involved in some activities, both are kind to others and seem to be making choices that would make a parent happy. I have asked them both to consider writing about their experience here, and hope at some point that you will have the fortune of learning from them. Those of you who have read through the whole blog have seen some entries from E already. For now, I’ll just say that parenting during treatments is a complicated thing. I never want to be a burden on anyone, especially my children. It’s hard to see a parent vulnerable, and they have been through about 5 months of it so far. I’m so happy to say that at this point the most vulnerable they see me now is tired and bald (well, fuzzy)…so far anyway. Earlier was tougher on all of us.
I’m grateful to A for recommending the book. It reminded me of my own coming of age, and I got a vision of A’s possible journey through several of the characters. I feel that when I told her that I took the time to read the whole book this morning, for the first time in a while she may have felt like she was my priority and this diversion we’ve been on was not completely monopolizing me and my time.
“It” was me today. As I prepare for tomorrow’s “invasion” number whatever, as I am noticing what may possibly be cumulative fatigue, some subtle gut stuff and really tight shoulder/neck muscles, as I hang out with the best katz in the world and invite B for a dance by the fire, as I look at E’s latest math paper and talk with A about her favorite characters in the book, I am feeling mostly like me. I am staying as in the moment as I can get. The crackle of the fire, the purrrrrrrs from the katz, the I love yous from my family, the continued support from people who really care about me. All of this is what will help me shine through as the chemo does its job and ultimately leaves my body.
Feeling better means getting back to work means having less time to do the things I’ve come to realize are SO important to me. And so it is with blogging. I’ve felt real good this week, and have been back to work AT work most of the days. When I picked my kids up the other day after school and took them shopping for some new jeans (they just keep growing for some reason…the kids, not the jeans), we got home after our usual dinner hour and I was exhausted. Oh yea, and that morning D and I did our walk at O’dark:30. Pretty much useless, I ate the great meal B prepared, and crashed in the recliner, a puddle of mush. Yesterday I worked another whole day and thus, I decided to work from home today…but not until after the chiropractor, food shopping and a nice ski with D and our goofy and swell canine companions.
Growing hair is a very serious business. I think the next baby I see I will appropriately hail them for their hard work! Now that I have a little more than a 6 o’clock shadow, I’m antsy for more…MORE…MORE! I never even thought about the process probably because A (our first child) had about 2 inches of hair when she was born and with E, the poor neglected second child, I don’t think I observed as much about the fuzz as I did other things. So this brand new hair is really funky and has started to have a mind of its own. I can keep my hats off in the car as long as the heater is on and at home, much of the time, if I’m close enough to the fire or the wood stove (or having a hot blast). It’s liberating, truly. I must remind myself that it could all fall out tomorrow, though not the usual outcome of Taxol as a second round chemo drug, apparently.
B has referred to Taxol and radiation as the suspenders part of treatment. I feel I’m somewhere in the bog of life between “Oh man, at least this isn’t as swampy as it was earlier.” and “Hey, is that high ground over yonder?” I just keep walking, just keep moving, just keep trudging, just keep laughing, just keep resting, just keep waking to face each day. SO another character that could give you a sense of who I am is ‘Dory’ in FINDING NEMO. She endears the hearts of some viewers and annoys others. BUT her “Just keep swimming, just keep swimming….” song keeps coming to mind as I move throughout my day like when I still catch myself saying “wow this is really happening” as I glance my fuzzy head in the rear view mirror.
I cannot / will not spend a lot of time dwelling on what we have been through over the past 4-5 months. Nor am I spending much time thinking about a reoccurrance, no more than I would wonder about getting hit by a bus each day. I no longer feel like I have breast cancer, but I am reminded every day by one thing or another. My body is my body and I think I’ve adjusted as much as I can at this point. I’m feeling really good still about the decision not to do any reconstruction as I continue to heal and regain my flexibility. I feel waiting on reconstruction has given my body time to heal from one thing. I have not been wearing many layers because of the hot blasts I am getting several times a day. My usual turtle neck and sweater winter wear is still in the trunk in our bedroom. I’m wearing one layer, often just a long sleeved cotton shirt, and have felt fine about my body. It is like I’m not even thinking about it any more. As I’ve said before, I suspect this will resurface in the spring / summer when I wear my bikini everywhere I go.
So in the area ofhow I’m doing on Taxol after 5 infusions, I’m definitely feeling the extra dryness in my skin that is more than just winter. I’m not feeling tingling at this point in fingers or toes, but am asked that every time I go for the infusion. It is a side effect that I am taking very seriously as neither I nor our oncologist want permanent damage from these suspenders. My several times daily application of skin cream entails pretty rigorous rubbing to stimulate circulation and keep my nerves alert (my words). My nasal passages are still like the desert. I have caught a cold this week, but it feels normal for a cold. I am tired and am intentionally laying low this weekend.
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.
Finally I’ve finished the drawing from cycle 4. I feel open.
Since we moved to our home 12 years ago, we’ve been saying good bye to the old year and welcoming the coming year with friends in a way that has become so dear to me. We hike up a mountain near our home together, send wishes for the coming year out to the fresh air and beautiful vista, eat clementines and ultimately end at our home for a feast. This week there have been warnings of a storm of the century which had some of the usual attendees hunkering down in their homes. It was beautiful to wake to a light snow, branches shadowed in white, and the knowledge that it’s only Friday!
The festivities actually start out on New Year’s Eve when we make the capaleti that my paternal grandmother served on January 1st. We have been blessed over the past several years to have some friends come to help. As with most old Italian fare, making capaleti is a labor of love. It has become a ‘don’t blink or you might miss it’ experience for me since my kids and friends have joined in. We talk, we laugh, we get flour everywhere. I consult with my favorite picture of Pop and I on the texture and thinness of the pasta. In years past, Mom and Pop would be making their capaleti around the same time we were, and getting the dough as thin as possible was somewhat of a competition. There are other experimental dishes that B and I each make along with cheesebread, sausage bread, antipasto and delectible contributions from those who join us.
Today we joined our friends and the walk up the trail was spectacular. The white blanket on our trail took my breath away today. I was with some of the people I love most and out in the beautiful woods. My energy was good, I only halted when I got a hot blast and had to pull over to shed my hats. At the top we ate clementines, took pictures, spoke about letting go and opening to the new. Kids climbed trees and others tried to catch some zzzz’s on the snowy rocks. I quietly scattered the hair that was shaved off in September where I hope birds might find it for their wintry nests. I took my hats off and let the snow melt on my head.
At home the fire was just enough and the company more intimate than many years. The capaleti got the best ever vote, finally we used the right size cutter, got the combination of ingredients right and the simple broth was delicious. B’s Jalapeno Pork Stew with pickled onions and our vegetarian options of Curried Peanut Soup with fried bananas and an Indian curried black eyed peas were scrumptious! But the most delicious part of the day for me was my feeling of being cradled by love. Don’t blink or you’ll miss that one. I think I can speak for those who attend this each year. It’s a great way to start anew.
Today I don’t feel like I had breast cancer. I was not reminded much that I am in the middle of round 2 chemotherapy. I awoke in the quiet early of a snowy January 1st morning. I hiked with friends. I hugged my friends. I laughed and heard the laughter of children. I made angels in the snow. I had no trouble letting go of 2009.
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?
We left at 5 something in the AM on Wednesday for our holiday fiestas. We have the usual stops for bladder relief and coffee/tea. At our second stop about 3 hours from home, we pulled into the parking space that a very salty car vacated in the crowded parking lot. One of the kids said “Hey, look who’s next to us!”. Our neighbors and friends (my walking partner D and her family) spent the night 3 hours from home and had just started their trek south. It blew our minds! We arrived at a rather unfriendly and crowded roadstop and were greeted by warm and loving hugs, laughter, and OMG’s. The mighty leaf organic breakfast tea never tasted so comforting.
A bit further down the road I saw a billboard. It was pink and the woman was saying “I never gave up.”
Traveling went well. I was really into the music I was listening to and was almost over the top happy on the road. (Sometimes it’s a little much for my family when I’m like this, I must admit.) We pulled into our destination (a warm home to ourselves, vacated by our kind Aunt who was on her own adventure) and were followed into the driveway by a delivery of a fruit bouquet from a childhood friend and her family.
I am so glad we took the plunge and went down for a few days. The timing at the start of our trip was so cool. I am feeling well and am SO grateful for that. OK, my skin is a little dryer than dry, my nasal passages are winning the Sahara Desert Award and my family says that Taxol makes me act like I have Attention Deficit Disorder. I don’t really suffer with the ADD thing because it seems to just be an enhancement of my usual from inside my own body. The dryness, well, it is soothed by things like good skin cream and steamy showers. I’m not really sure how others feel about the Taxol effects but it seems tolerable.
Seeing Mom, all of my brothers and sisters in law, most of our nieces and nephews including some of the canines, some of our cousins and their children, other relatives and friends was wonderful. The love was a little more intense (if that’s possible). There was something slower about my interactions with everyone, a longer glance, a squeeze at the end, long cheek to cheek hugs, talking in whispers. I was accused of being like our kat Guiseppi who just gets right into head scratching as I leaned into anyone who was rubbing my head.
I was struck by many things. When I saw Mom for the first time, I had my cotton hat and my hat with the bells on and she said “Let me see you!”. I took one layer off and she said “What’s with all the hats?”. I took the other off and said that I had to do something to keep warm. She said “Why did they cut off your hair?” As we were hugging and I explained what chemo does, she looked at me with her failing eyes and said “I’m so sorry you have to go through this.”
I was struck by the two children (ranging in age from about 8 to about 12) who asked me how I was doing. Each of them found me at a quiet moment and sat or stood next to me at the Christmas Eve party. The youngest one said “I am so sad that you have cancer. One of the teachers at my school had cancer and died. I don’t want that to happen to you.” She told me that when her hair was out of the pony tail that it came down to her waist and asked if my hair would grow back. Her sister found me just before the CRAZY gift swap. “How are you Aunt P?”, and she put her hand on my shoulder. The sincerity in her eyes and the way she tilted her head took my breath away.
I was struck by the optimism and open heart of another who is dealing with his own cancer. So up beat, so in the NOW. Seeing he and his family was wonderful.
I was struck by the love. It was everywhere. It was between our children. It was in our quiet Christmas morning, just the 4 of us…It was in the food we prepared, the food we ate, the laughter. It was in the air. It was intoxicating everywhere I went. B’s glances, arm around my shoulder, touch as he passed by, warm hand on my cold head, reminded my why I said “I do”.
I was struck by the conversations. I was GRATEFUL that conversations were not only about cancer. In fact, most of them were not. I am grateful to have seen my loved ones, and that they got to see me and my family.
Breast cancer did not make me feel sick…not at all. The treatments made me feel sick temporarily, the surgery made me feel sore temporarily. I don’t feel sick right now. The images we create of someone going through this must be tainted with fear and unknown because the common statement that I heard over and over was “You look terrific!”. I was with people who have known me forever. I know it was not my outfit or doo rag that they were seeing. It was my energy, the color of my skin, my eyes and smile. It was my posture and attitude and humor. They were finally able to see me without the breast cancer filter that distance creates, if that makes sense. I was just and still me.
Today it’s pouring in our neck of the woods. We are nesting after days away. We are preparing for the kids to have a week off, and for B and I to attempt getting them where they’d like to be, getting us to work and dealing with cycle 4 which starts tomorrow.
I’ve felt really good all day. Went to acupuncture and showed off my improving range of motion in my left arm. I truly think the herbs and acupuncture are helping tremendously with my tolerance for Taxol. I worked most of the day. We are packing for the holiday with family and will take off early dark tomorrow. I am not sure about whether I’ll post anything before Saturday when we return. Don’t fret, the katz will be well taken care of by a friend who loves them!
Have a fun and delicious holiday, whatever you are celebrating. Travel safely if you are going anywhere!
