Monthly Archives: May 2013
My hair continues to fall, in a consistent, all-over shed. Some of it falls down my neck, so it’s like having just had a hair cut. No matter how well my hair dresser covers me up, I still get a few snips down the back of my neck. It was making me crazy, so I broke down and wore the cotton cap I received from the Patient and Family Center at SCCA. I was planning to take it back, since I found two hats on line that were cuter, and thought I don’t need the freebee. But it has turned out to be useful. Not only does it catch the hairs from falling down my neck, it covers my head when I feel a little self conscious, such as last night after my shower. Every time I ran my hands over my hair to help rinse out the shampoo, the conditioner, my palms were full of hair. Yikes, I’m so glad Ken bought a drain trap for the tub and shower. Looked like a drowned Tribble.
The mirror was too steamy to see the damage right away, so I got dressed and cried a little about what was happening to me. Cried a lot more with Ken, trying to figure out what it means to me. Everyone says it’s just hair, it’s just a short phase, it will grow back. I know all this. Ken wants to know what I want. I say I want to live, I don’t want this to come back. Ken says my hair lost means we are doing what we have to do to kick this things butt. I know this too. But I don’t like change, especially when it is change I did not choose.
Funny thing about change, though. If I chose it or not, I’m always, ALWAYS better off for the change. That will be true this time, as well. I may not see all of the wonder right away, but I know it’s there.
Later last night, when the bathroom mirror cleared, I took a look at my hair. Definitely thinning, no real bald patches. I know that is coming, though, and we are prepared. I’m not going to be one of those patients who doesn’t lose any hair, but I’ll take it. I’m lucky. I’m halfway into this, and as long as I don’t eat too much when I do feel good, and remember to stay well hydrated and eat small meals when I don’t feel that good, stay ahead of the nausea with my anti nausea medications, I’m pretty functional. Until I overdo the activity and get tired. But getting tired is a good thing, too. I get tired when I do too much, I’m not so fatigued I can’t get out of bed.
The nausea is manageable, the fatigue is manageable, and the hair? We got that covered, too. I just gave myself the giggles there. Hair. We got that covered – in more ways than one!
So my hair isn’t coming out in clumps as I had feared. It does come out in my hands with I shampoo (very gently), condition, and apply my leave in scalp treatment. Because we are not only cleaning the hair, we are caring for the scalp, and I think it really helps. I don’t have that ucky waxy feeling as I experienced last time.
But my scalp does ache in places, and where it itches is where the hair seems to be falling out when I run my fingers through it.
When it does come out, there is no root attached. Ken’s theory is that follicle just shuts off, and so the hair stops growing and simply detaches itself. As I mentioned in another post, I hope when the new coat grows in, there’s not so much silver.
Started to worry about my eyebrows and eyelashes, but on www.headcovers.com they have that covered, too. You can stencil and temporary tattoo, you can draw in brows that are sparse, or they’ve got three different shapes of brows in a few colors you can simply glue on like you might attach false eyelashes. Oh, and they have those, too. Lots of styles, plenty of colors, and a few ways to attach them. Don’t know if I will lose my eyelashes and brows, but I ordered some back up just in case.
At www.headcovers.com they also carry wigs, wig care, turbans, scarves, and hats. I have my eye on one of the short wig styles. But I did order a couple of the cuter night hats, as they said they would also be cute under a sun hat.
I started off this morning wondering if it was time to talk about shaving my head. That got me crying again, because I don’t like change, no matter if I choose it (moving to a better home) or if I don’t (losing my job, losing my hair). At least, not at first. I was pretty upset when I was told that my job was ending at the end of April. But now I see this as a good thing. My former employer has done so well in supporting my care, that what I had grieved about previously (leaving my boss, who I loved; watching them all make plans for the future, and knowing myself not part of that future) is not the greatest of benefits. I couldn’t imagine trying to work up to my standards while I was undergoing chemo. It’s too exhausting. Everyone would be great about it, but I’d feel so guilty.
So instead I spend my time almost completely self-absorbed, worrying about when to pull the trigger and shave my remaining hair off, and how to look cute while I wait for my spring/summer coat to grow in. And shopping for wigs and cute hats is kind of fun. Because you have to shop for cute outfits to go with them, right?
I was feeling kind of sad and mopey about my hair and my lack of control over it when I started this post. I’m not any more.
Ugh, I’m so tired. My hands and feet sort of ache, which I think it caused by one of the anti nausea drugs.
The first time we did this, I was so relieved and euphoric that I immediately went out and had a beer, and a huge meal. By 8pm, I was miserable. I took it easy this time. No idea where I’ll land or when the IV anti nausea meds will wear off. I’m not too worried, I kind of know what to expect. And I have a battalion of anti nausea medications to attack the roller coaster of nausea ride.
Oh, and I agreed to do a clinical study on fatigue. No extra appointments, it’s all surveys I complete on line.
I’ll write more later. Think I’ll take a nap right now.
I have decided I’m not losing my hair. I’m shedding my winter coat.
Hope the new coat isn’t quite so silver….
I’m getting ready for my second infusion. Showered, used my Nioxin as advised by Jami at MODA, did my makeup (forgot eyelid primer, oh well), then started on my hair. Seems like if I mousse it when it’s still wet, it takes longer to dry, and I don’t get the lift that Emi did when she styled it for me. Well, I started to blow dry my hair, realized I forgot the mousse. Oh, well, it still looks cute. Went to put in the styling paste on the back and the bangs – there is quite a bit more hair coming out than normal. Not huge clumps, as I was afraid of, just 30-40 strands, where it seems like I get 10 or so when I style my hair. So it begins, I think. I tried not to cry, as I didn’t want to mess up my eye makeup. Not sure I can keep it up all day. Wish me luck.
Good thing I’m getting fitted for a wig today, huh?
I still need to learn how to tie a head scarf, but that’s what YouTube is for.
Here we go….
Tomorrow is the second infusion of the dose dense a/c chemo. We changed medical oncologists, as you may know, and we also received our new schedule. That week after the first infusion, the time seemed like it was going to stretch out ahead of me for such a long time, but I’ll have two more infusions after tomorrow. My last one for this round is June 13. June 13! I can do this…
I believe we may have turned the corner on the scare factor, at least for the moment, as regards our daughter. She’s starting to feel comfortable enough with how I look to ask questions. And she’s starting to feel involved with my routine and my home care.
Today was Mother’s Day. Last year my daughter and I went crazy baking scones, crumpets, and I forget what all else. We had a fancy tea party out in our backyard, and had a great time, until some bees chased us back indoors. But we were so pleased with our efforts, and had such a great time, we decided then that we wanted to make the Mother-Daughter Tea our annual event. This year, I had the best of intentions, and we had similar plans. It seemed like the weather wasn’t going to cooperate, so we also planned to hold the tea party indoors. So we started on Saturday with chocolate chip cookies. We ran out of sugar, and I ran out of steam, before we could move on to the next phase, petite vanilla scones. I made spaghetti on Saturday night, I’m not kidding, my best batch yet, and after running the dishes I just couldn’t face the stuffed mushrooms I’d planned, much less those scones. So we relaxed the rest of the night. Sunday I had to do dishes again, before I could cook breakfast. That wiped me out, and I had to rest again. Once I had a little energy back, it was more dishes, and start the cinnamon buns. That was from a mix, but after getting everything ready, I was too tired to continue, and needed to rest again. I don’t know what’s wrong with me, I didn’t expect to be that tired. Anyway, about lunch time, our daughter decided a Plan B was in order. Her thought was since it’s lunchtime, we would make cucumber sandwiches, cheese and crackers, set out a plate of our chocolate chip cookies, and make the tea. Turned out to be just enough of a celebration, but without undue stress on me. Floppy hats, sundresses, and a posh accent rounded out the details of this year’s event. Until she decided that the posh accent was too much work, and the floppy hats sort of got in your way, then the sun dresses and how we normally talk were sufficient for an indoor tea. So that was brilliant, and she read to me out of her Beatrix Potter book for quite a long time, while I relaxed in the recliner, sipping my tea.
Later that evening, we were talking in the kitchen, and she was looking at the scabs formed over my incision sites, from when I’d had my port placement procedure. Usually she doesn’t want to see any scar, scab, or other evidence of my cancer. But we were hugging, and she wanted to be careful of how she hugged me, since I’d bumped the port itself the day before when she gave me a hug. She looked carefully at the scabs, and asked me about them. Not in a fearful way, but in a curious way – she wanted to know if they were looking as they should, or had I caught them on something. That was the first time I thought – she is maybe getting through that fear she’s been struggling with since we started this little game. And she’d been mostly struggling in silence. We could see she was worried, but she never seemed comfortable asking a question. It occurs to me only now that maybe the fact that she feels she has some control and something to contribute towards helping her mom that has made the difference. She’d seen me doing some of my physical therapy stretches, and was helping me with the counting. Then she had the idea that she would help mom keep faith with her physical therapy by setting up a “training” schedule to include the exercises I’ve been prescribed to do, as well as some she wants to think up on her own. I thanked her for agreeing to help me, and she seemed quite happy to be involved. It makes sense. No one likes to sit by doing nothing when a loved one is sick. It stresses Ken out, I frets my sister, so of course it’s completely awful for a little girl who’s only outlet is to worry about her mother and to ask everyone she knows to pray. Now she is actively helping, and that seems to give her a happiness and a peacefulness I haven’t seen in her since we began this process.
Now she can see that her mom will be getting better, and she knows that she helped that healing process in a meaningful way. Which is all she ever really wanted.
Hair and appearance are important as you go through this experience. Actually, it’s important through the entire experience called Life, The Advanced Course. I hadn’t recognized this fact until yesterday. I sort of take my hair for granted, I really do. I let the roots grow out too long, the cut go stale, and I don’t spend adequate time caring about my hairs specific needs for the stage it happens to be in at any given time – pregnancy, age, being ill. It just sort of hangs around until I decide to spend the money to do something about it. I am being stingy about the cost of maintenance, as I have “more important” things to spend it on – right?
But my hair, just as much as my two boobs, are part of the view I have of me. I was sad about losing my right breast (poor Frownie), and I was freaked out about losing my hair. I revisit this fear every time I wash my hair now, noting any tenderness in my scalp, and when I wrap the towel around my head, I wonder “Is today the day it starts coming out in my hands?” and how will I react to that? I’ve started sobbing in the bathroom some mornings, as I tenderly pat my hair dry.
As some of you know, I’ve been considering cutting my hair short in preparation for the day, coming soon, when it will start to fall out in my hands. I have worried about how my regular hair designer will feel as she shampoos my hair in preparation for the cut – will it come out into HER hands? Will she be grossed out by me? I just couldn’t face it.
Boy, was I wrong.
I am a regular customer at the Moda Hair Café and Day Spa in Edmonds, WA. They always make me feel welcome and important, and they really do feel that your hair is important, at every phase and incarnation – including the one I find myself in right now. These men and women are true professionals, and artists. Making your hair look its best, caring for it, and giving their advice, taking into consideration your hair special needs, is their profession, and they take that very seriously. I should have known this, based on the entire salon moving into action, all hands on deck, when I had an unfortunate home hair coloring experience. Ladies and gentlemen of Moda, forgive my foolishness. I will never again take action against my hair without consulting your professional advice.
Let me tell you about my conversation yesterday with one of the co-owners, Jamie.
MODA is for Mother-Daughter, as Moda is co-owned my a mother-daughter team. Jamie is the daughter. I’m so grateful that it was Jamie herself who picked up the phone when I finally got the nerve to call. Not only did she spend 15 minutes with me on the phone, but I was in tears of gratefulness at one point, so much was I touched by what she had to say. She corrected my assumption (I’m ashamed of myself, Miss Jamie) about anyone feeling strange or uncomfortable about my situation. We are professionals here, she told me, making you and your hair look its best is what we do every day. About my regular artist, Emi, she said “Let me tell you about Emi. Emi is a natural artist.” She told me if I put myself in Emi’s hands, I could trust her to give me a flattering hair cut, best suited for what I am dealing with. She also told me they have many clients who have faced cancer, chemo, and losing their hair. That it’s just a short phase, and that we have to take care of the hair and the scalp underneath. She advised me on some options, and felt they would do well by me, in removing the residues from chemo that I keep feeling in my hair and on my scalp. She also told me that everyone’s experience with hair loss during chemo is different – some don’t lose a strand, some lose it in patches, etc. By the end of that call, Jamie had convinced me that no matter where I land in that spectrum of hair loss, I was in good hands at Moda. They can not only handle it, they will be able to offer their professional advice and support to me while I handle it. I love you, Miss Jamie, and I love Moda.
We also talked about how chemotherapy and hair loss is “just a short phase” and how my hair will be different when it starts to grow back. This means my hairs needs and how I care for it will change again. You can bet that I will be calling Moda when that time comes – I’m going to need their professional advice!
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Yesterday was Tina’s first Chemo day. Lots of stuff going on.
First of all we have asked SCCA for a new medical oncologist. Over the last few days we had a severe personality conflict. Tina and I are intelligent people who get value and avoid stress by understanding what’s going on. I also manage processes and often do projects where I broker communication. Our oncologist seems TO US annoyed, if not a bit threatened, when we ask questions, or wanted to understand the value in repeating a very painful biopsy that was done just four weeks prior. In the end we were right, there was no need for the test, but to the very end the oncologist was dedicated to justifying the original request, even though the gyno oncologist when asked, quickly confirmed our suspicions that the painful test was not needed twice.
At one point when the Oncologist could not answer what the value of doing the same painful biopsy was, the oncologist pulled the “And where did you get your advanced medical degree” card. Really.. that is the best you have after 10 years in Med school etc? I pulled the “I am a professional project manager and work at creating clear communication between project stake holders all the time” card. Education doesn’t intimidate me…
I may not be a trained car mechanic, but when my mechanic wants to flush my transmission twice in a month, I am smart enough to question this call. SCCA’s patient relations rep Connie was a star in helping us get the right answer to our question, keeping Tina from being bullied into a painful unneeded procedure and now helping us find an oncologist that is a better match for us.
Getting Lucky in Chemo
In case you don’t know Chemo drugs are designed to target cells that are actively reproducing at a faster rates. Given Tina’s tumor grew to a freeking 12 cm in less than year, I am sure our cancer fits that profile. [assuming there are any cancer cells left, remember we are lucky in that this is a proactive after a very successful tumor removal] Unfortunately for the patient, hair follicles, finger nails, blood cells and the entire lining of your GI tract from mouth to “exit port” also fit the bill. This is why you lose your hair, need immune treatements and tend to have digestive issues. Chemo is cumulative so this week’s relatively easy reactions may get worse.. and we are pretty sure her hair head’s hair has few days before it goes. Though for some reason armpit hair isn’t affected.. sigh… Also digestion and waste clearing goes down hill.. it will recover… but still who wants to have flu-like symptoms for several weeks.
For all the anticipatory stress and Hollywood images of cancer patients getting chemo, it was a much more pleasant process then talking with our Medical Oncologist. The port Tina had installed made the infusion of a half-dozen different drugs so much easier than an IV. SCCA clearly has this down to an art and our nurse for the 3 hour process was both professional and pleasant.
There was about an hour of just infusing anti-nausea meds before we got to the main feature. Then the first drug Doxorubicon comes in three large RED ominous syringes that need to be infused over 5 minutes each.
“Mr Bond.. when the third plunger has fallen, your days will end..”
It reminded me of an episode of Alias or James Bond. “Mr Bond.. when the third plunger has fallen, your days will end..” [insert deep maniacal laughter here– BTW my 9 year daughter does a very disconcerting villain laugh.. I hope this does not foreshadow a future career in tax collections or something]. The infusion machine does both syringes and IV bags automatically so the nurse can manager many infusion bays at the same time. To make the RED syringes more ominous.. every time the nurse comes in to change out the syringe .. she puts on a disposable safety gown.. to protect her from exposure.. Ok I feel lots better now… maybe not
Tina took a full anxiety pill near the start of this.. Better than a Tequila Sunrise for loosening her up. She is in the bed, I am in the recliner next to her… Lots of time to talk and hold hands.. and she did get very flirty and cute.. In general it was a pretty good date for two parents of a 9-year-old doing cancer treatments. We even got a little titillating in the talk and also worked out the expectations for physical affection during our tour of cancer treatments and boob reconstruction. I can safely say that under less medically intense times.. this date was going to end up with us having all sorts of fun.. We settled for and enjoyed a burger at a local bar with some beer /cider and some pleasant affection at home that culminated with our 9-year-old shouting from her room “I can hear you smooching!” mood over… ok not really.. we moved it to the next room SMOOCH!
In reality we had been doing some re-courting and re-bonding in the months before the cancer was found.. and this process has only increased that.. but with less sex..
And a good Puck
Ok it was a fun title.. but it refers to the fact that I trained Tina on the new grinder and espresso machine and one of the signs of a good espresso batch is the grounds in the porta-filter fall out as a single solid puck. I got one last night.. the filter looked like it has been washed.. so I had a good date.. some smooching and a good puck.. what more could you ask for?
Not so fast!! This is Chemo…
Tina after over doing her first post chemo dinner and coffee party.. did have about an hour of nausea and tears.. partly because she was so giddy after an easy session and some beer it was just a big ol’ slap in the face to remind her.. this is chemo.. [but honestly onion rings, a cheeseburger, beer, bread pudding and two coffees would have made her ill without chemo].. so its humus, crackers and cucumbers today..
But she has one drug that is a mood relaxer and nausea preventer so she was only sad and sick for about an hour.. and pretty cute and chatty afterwards until bed time.
Okay, so yesterday was my first chemo, and it was great. Nothing really hurt (I did take anti anxiety before we left, then again four hours later just before they start the chemo drugs).
First they do a port draw, to make sure the port is functioning, then they take a little blood to get baseline blood counts.
Then I met with the medical oncologist – more on this later. I’d been fighting with her about a painful endometrial biopsy she INSISTED I had to repeat. Turns out I don’t, but as I say, more on that later, like in a separate post. The clock is ticking on when I have to give myself an injection, and I want to get this up before I do.
After the meeting with the oncologist, very short, we met with her nurse, and we went through some patient education, such as the anti nausea meds you receive before they start the chemo (Yay!), and this injection. She brought a clean, empty syringe, and had me stick it in my belly, just to show me (and her) I could do it. I mange to get through injections by NOT watching them. Oh, boy. But I did it, and IT DIDN’T HURT. We’ll see if that changes when I’m pushing down the plunger, and the medicine goes in. I have to count to 20 as I slowly push it through. Ugh. But the needle didn’t hurt. Turns out you have fewer nerves in your belly and your thighs. Who knew. I didn’t, and I was euphoric! Talked about it for a good minute I think.
Anyway, the chemo infusion center is clinical, beds and everything. I had to lay on a bed, but that turned out to be a good thing, as I was there for over 3 hours. Between the anti anxiety and the anti nausea, I was chatty, silly, and flirty (this last according to Ken). Then I got a little sleepy, and dozed off between cooking shows and Ken running to the patient nourishment area (have you heard about this??). The patient nourishment center, they have two, are the BEST part of the whole floor. The smaller one has juice, crackers, ice and water, peanut butter, two kinds of cheese, and shortbread cookies. OMG. THEN, the nurse showed us the larger patient nourishment center. All the same stuff, including the soup, apple sauce and pudding I forgot to mention. But they have the Akmak crackers ONLY in the larger center. AND a freezer, with frozen macaroni, and ice cream. What???
Uh, oh, timer went off. It’s injection time. More later.