Life goes on
rachelupdate
Hello All,

It has been a long time since I have written, and life has just kept on keeping on. I am trying to get back to normal now that all my treatments are done. My hair is really growing back in earnest now (see picture) and miracle of miracles, the hot flashes have tapered off. I wasn’t expecting them to, so it is really wonderful not to be constantly taking my clothes on and off. The medical oncologist said that this means that I am getting ovarian function back, yay. I follow up with them in early July with MRI, ultrasound, and mammograms and then with the radiation oncologist in September. I’ll trade off between the two of them every three months for the next 2 years.

I am mostly recovered from the radiation treatments. I have some adhesions at my under arm scar, which isn’t comfortable. Basically, the scar is attached to the fascia, the sheathing around muscles. Sometimes when I extend my right arm, it pulls all the way up my arm into my wrist. I am doing some tissue massage to get it to release, but it is slow going. My skin is almost all the way recovered, though, which is good.

Most of my time I am kept occupied with work and the garden. I have about 5 experiments planned for the summer, hopefully one or two of them will work. Colin has turned over about half of the beds and about a third of them are planted, peas and spinach, and some brassicas are coming up. We might have greens coming out of our ears, but I am excited about that too.

May will be a big month for me, planting field experiments, planting the garden, and turning 30. Most 30 year olds haven’t had to deal with the same kind of drama that I have, but that is ok. In exchange, I have gained more perspective. I am not freaking out about being old, I am excited about the opportunity to become old, I hope that I get to get some wrinkles and grey hair (hair has grown back lighter, no grey). I think that my 30’s could be a really good decade. There is lots of fun to be had, life to be lived, and mangoes to eat. Mmmm mangoes.

Thanks all for the cards that I have gotten in the last month in a half. Soon enough I will have compiled the pictures. Well, I hope that May is treating you well.

Love Rachel


See, I have hair!!



Me and Colin at the Meijer Botanical and Sculpture Gardens


radiation shmadiation...
rachelupdate
Hello All,

It has been a long while, but there hasn’t been much to report and I have been busy. In the meanwhile, everything has been progressing as they should. I am nearly halfway done with radiation, getting excited about spring planting, and … growing some hair. The hair is very short and fine and quite dark, maybe it will be long enough for me not to wear a hat by the time it is warm enough not to wear a hat.

I finally got my lymphedema sleeve. It is purple. I had to convince the fitter that they did come in different colors (she wanted me to get a skin tone one). She was really happy with it when it arrived, and I think might recommend them to other patients. Now I look like a basketball star when I exercise. Well, a short, round, basketball star.

These last three weeks of radiation have not been perfect but they are not as bad as chemo weeks. The worst part is having to get up early every morning to get to the West Michigan Cancer Center before 8:15. It is all of 4 blocks from my house, but it is still somehow a challenge. They are very nice there, and the ladies that have radiation at the same time as me are an interesting bunch.

So far I have not had much side effects from the radiation. My skin is a little hurty, and I might have a little more swelling in my arm/shoulder, but otherwise, so far so good. In fact, my energy is much improved from the end of chemo. This is really quite wonderful, as I now have more energy for yoga and other activities. Colin and I have finished our introductory yoga class and have tried, to comic effect, to attend 6 am yoga classes. The first time I failed to properly set the alarm, and the second time, we got there 2 minutes late to find the studio door locked. We then spent the next 30 minutes wandering downtown kalamazoo in the cold and dark, looking for someplace to find coffee. The only place that was open was Subway so we headed home for a leisurely breakfast instead. Despite my failures at yoga, I have had some success at running. My friend Megan has encouraged me, and I joined her in a 2 mile excursion, of which I ran about a mile. The running didn’t feel good, precisely, but the fact that I am able to do it feels amazing. I hope to continue running, maybe even today once the snow is melted and the roads are dry.

Sadly, my returned energy will be departing again as the radiation proceeds, but I hope to keep up activities as best I can.

In the meanwhile I will be starting seeds for this summers garden. The artichokes need to be planted now and some other things also need to be started soon. I think that I am most excited about the artichokes and the poppies I am planting for flowers and also seeds. Also, I am looking forward to canning tomatoes and peaches and other fun things.

Many thanks for all of the cards (pictured below) and also to Nina for the lovely sun catcher, Wendy for the lovely (hand knitted) sox, Chris for the box full of treats and a pressure cooker, and Clare for the scarf/shawl/clapotis wonderment. I hope that this finds you all well. Here is to a spring with flowers and sunshine!

Love Rachel




And here is my hair:



8/8ths done with chemo = DONE!
rachelupdate
Hello All,

It is official, I am done with chemo. (Yahoo!!) This last round was relatively easy to handle but the fun and games are not yet over. Hair will come in slowly, an unknown color and texture. I should be feeling mostly better in 5-6 weeks but it might take me 6 months to a year to be all the way better. It is going to be hard to be patient and wait that long to feel good, and I expect that I will feel frustrated along the way. Hell, I already feel frustrated. I want to be better now! In addition to continuing physical challenges, the emotional fallout of having cancer isn’t going away just because the chemo is over. As long as I was getting chemo, I felt safe because was actively going after the cancer, so it couldn’t get me. But now that chemo is done, it feels a lot like a waiting game. However, the tamoxifen that I will be taking when I am done with radiation is as effective as the chemo at preventing recurrence, so taking that little pill once a day will be a good thing. And of course, there will be radiation to prevent local recurrence. I am continuing to work with Karina, my mediation therapist/counselor as my situation keeps changing.

My chemo hero this last round was my friend Erin, a good friend from UConn. She is awesome and took an extra day off work and changed her travel plans to beat a nasty snow storm. We took advantage of this by walking around Ann Arbor and having dinner with her friend Sean and his girlfriend Shana (spellings approximate). Early the next morning we headed to the hospital where they had to poke me twice for blood and three times for the IV. Oh well, since I wasn’t going to turn red, something exciting had to happen, right? People were very chatty in the infusion room. There were some people that I had met before, and some new people. It seems like one chatty person can set the mood for everyone. Everyone was very excited for me that I was done with my chemo. After finishing with chemo Erin and I provisioned ourselves at Whole Foods (yuuuuum) and then headed back to Kalamazoo for dinner with friends and an Avett Brothers concert. I had been extremely excited about the concert, but it was a bit louder and went later than I had hoped. I guess they will be a band that I like recorded not live.

We continued the fun with breakfast with friends on Friday morning and then a lymphedema appointment and then skiing at Saugatuck (a state park on the Michigan Coast). Skiing was awesome, Erin wowed Colin with her fancy stopping skills, and the trails were beautiful. The hills were epic and while I was slow I made it up all of them, and down most of them without wiping out.

The weekend took a turn for the quieter on Saturday in large part because I finally experimented with the marijuana that I had acquired to deal with chemo side effects. We made pot brownies. It was supposed to be a weak recipe, but I had one (very small) and then was loopy and tired for the next seven hours. I decided that sleeping would feel less weird than being awake so I slept most of that time and then I slept all night Saturday, and still slept for quite a bit of Sunday as well. I must say, the sleep felt great, and I didn’t hurt on Saturday at all, so that is good? But now I have a whole lot of leftover brownies, so if you are local and want one, let me know. I’d like to know if they are strong or if I am a lightweight.

Thanks to all for the continuing cards, they really have made a huge difference in how I feel. Knowing that there are people out there who care about me makes the struggle not so scary and terrible. I will get pictures up as soon as the cards and I are in the same place. They are in Kalamazoo and I am in Hickory Corners riding out a blizzard.

Thanks also to Janet for the lovely scarf and Lesli for the valentines. Watch out people, you might get one in the mail.

I guess this ends the bi-weekly postings. I will continue to keep the blog updated as exciting things happen (radiation starts) tamoxifen starts etc. but I expect that I will have less to report on regularly.

Love Rachel

and here are the thank yous...
rachelupdate
In my earlier blog, I forgot to thank calley for being an awesome chemo hero.  Not only did she do the normal chemo hero things, she also knit me a hat, but it was too big, so she knit me another one.  She also darned my sweaters!  Yahoo, no more holes.  It seems that I might have moths.  Thanks also go to Annie for the itunes card, it will be used to buy some fun music, and to Becca for the Mobius strip scarf thing.  It is  awesome, and warm and pretty too!

Thanks to all of the people who sent cards and letters.  in no particular order, thanks to:

Annie, Martha, Grandma Olive, Margaret, Amanda, Grandma Olive, Su, Wendy, Tavi, Grandma Litty, Sarah, Chris, Jessie, Grandma Olive, Em, Grandma Olive, Kathryn, Leslie, Hillary, Aunt Nina, Michelle, Grandma Olive, Craig and Elijah, Calley, and leters from Sarah R, and Craig.  Not shown is a card from Becca D, because it is taped to my desk.

Since the addition of my two evening classes (and no addition of energy), things have gotten a bit chaotic around here, so there is a high probability that I have forgotten to thank someone for something.  I am sorry, if you were excited to see your name in print, send me a message and I will add it.  I hope that you are all well.

Love Rachel


one more chemo
rachelupdate
 Hello All,

I have one more chemo left, and I am definitely finding myself thinking lots of post-chemo thoughts. Last week I had my first appointments with the lymphedema therapists. Lymphedma is swelling caused by blockages in the lymphatic system that prevent lymph fluid from flowing back from the extremities. Since I had 30 lymph nodes taken out and have a huge mucking scar running across the drainage area as well as scar tissue where there used to be those lymph nodes, I am guessing that I am going to end up it with it sooner or, hopefully, later. I haven’t been having any swelling (yet), but I know that radiation can make it all worse, so I decided to be proactive and get everything in good working order before it gets more hardened. The surgeons and radiation oncologists would have you believe that lymphedema is fairly rare, but it is something that is more likely to show up over time, so I don’t think that they see the real numbers.

Thursday, Colin came with me to my first radiation oncology appointment. I will be getting my radiation at the West Michigan Cancer Center, which is about 4 blocks from my house. There is also a gym there that I can use. I will be getting radiation for 33 days, or 6.5 weeks, starting on February 10. They will be aiming radiation at two parts of me 1)my boob/chest wall 2)the lymph nodes above my collar bone. They are irradiating my boob/chest wall area because I chose to have a lumpectomy not a mastectomy. This is needed to make sure that the cancer does not come back in the boob. This radiation beams are aimed across me and will intersect with some of my ribs and lungs and the area where they took out the lymph nodes. There is a small chance of rib fracture someday and a little risk of some pneumonia. They are irradiating the lymph nodes above the collarbone because that is the next place that cancer spreads after the armpit lymph nodes. I had 3 nodes with cancer in it and because I am so young, the radiation oncologist wants to be aggressive to make sure that the cancer doesn’t come back there. With the radiation, there is an extremely slim chance that the cancer will come back in those lymph nodes.

The radiation itself is usually tolerated pretty well. Most people don’t notice anything for the first few weeks, but later on there will be some burning on the skin and tiredness.

Since I am starting pretty soon after I finish chemo I will actually be feeling better and better through the first part of the radiation, and then start to get tired at the end.

(note-it is now Monday)

This weekend I went to the KBS retreat up north near sleeping bear dunes national park, where they had TONS of snow. The skiing and sledding and snowshoeing were great, as was the hanging out with the people I work with, in a less structured setting. I made sure not to do tooo much, but otherwise I wasn’t too limited by my fatigue. I am very much looking forward to feeling better and getting back into shape. I am probably going to sign up for a 5k in early May, so that will be good incentive to getting me moving again.

In other news, I started taking two classes at the beginning of January. Monday nights I am learning how to draw. It is quite challenging, and the 2.5 hour class definitely stretches my stamina. Wednesday nights Colin and I are taking a beginning yoga class. The class is really well taught with a lot of emphasis on doing the poses properly. It is Colin’s first yoga class so I am glad that he is getting that kind of instruction. It is a good refresher for me, and it feels really good to be active and stretching the old body out.

Also, the last chemo went fine. It turns out that if you give me benedryl before the drugs that I am allergic to, I don’t react. Who knew? It only takes 5 hours this way, not 6.5, so that is good.  I am officially ready to be done with chemo, I am sick of feeling achey and sore for the 6 days after it, I am tired of being tired, and I wish that I had my eyelashes back and my hair would grow back.  But I will be a good girl and be patient and not throw too many temper tantrums or be too grumpy.

That is all the news here. Shout outs and thank yous are coming soon.

Love Rachel

3/4s done
rachelupdate
It appears that I am an exceptional person, exceptionally reactive that is.  Most of the people who react to the taxol only do it on the first encounter, but I reacted again.  This time I was less red and a little more chest tightness, so there is some concern that I might actually be allergic to the taxol.  So far, however, they have still been able to give me the entire treatment, and that is what matters. All it takes is 6.5 hours in the chemo chair, IV benedryl, and lots of good company.   This time there were a whole bunch of women getting the same chemo in a row, so we chatted about the side effects.  Apparently I am not the only person on AC chemo to eat nothing but potatoes.  There was another young woman too, 34. 

Jessica, my grad school roommate and good friend came in to be my chemo hero this week, and it has been lots of fun having her around.  We have had some cooking adventures (mmmm custard) and enjoyed interacting with the cat that I am cat-sitting.  She is even doing my dishes, which she hates.  I know that is extra special.  We had a very nice new years with KBS friends; dinner and temporary tattoos, and face masks, and fireworks that we could see from my bedroom window, and champagne and wine.  Sadly, my enjoyment of new years eve made for an especially achy and lazy new years day.  In addition to the normal skin and bones hurting, my head hurt too.  Oops.  However, we did manage to walk around downtown and eventually found someplace that was open and serving food.

So now that I am almost done with chemo and have gotten used to it, I am starting to look ahead and think about the next stage, radiation therapy.  I will be getting radiation in Kalamazoo, because it is an every day kinda treatment, i.e., you get it every day for 4-6 weeks.  I have an appointment with the radiation oncologist here later in January, and I will probably start radiation in late February or early March. 

With the New Year I also have some fun new things starting.  I will be taking a weekly yoga class with Mr. Colin.  My goal for me is to be stronger by the end of it.  My goal for him is to be able to touch his toes.  I am also starting a drawing class one evening a week at the Kalamazoo Art Institute.  Hopefully it will make me a better drawer, and thus make my linoleum carvings better. 

And now for some shout outs:

Thanks to Sally and Emily for the awesome wallet.  I look forward to using it to spend money.  Thanks to Becky for the flowers and the angel.  They are decorating my office.  Thanks to Jessica for the lovely bowls to add to my bowl collection.  You can never have too many bowls, unlike mugs.  Thanks to Karolina and Dan for the funny book.  He must have been high when he wrote it.  Thanks to Jane for the lovely mix tape with the story at the end.  And extremely belatedly, thank you to Tavi for the wonderful red scarf.  It is very soft and pretty and is in the rotation of scarves that I use.

So the picture uploader wasnt working, but thank you's in no particular order are below:



Thanks to Ryan, Margaret and Katy, Chris Su and Morgan, ML, Lori and Tina, Grandma Litty, Nina, Mary Hochsmouth, Aunt Nina, Kristiina, Zach, Grandma Olive, ML, Sally and Emily, Karen and Charlie, Sally and Emily, Calley, Becky, Jane, Phil and Daphne, and Karolina and Dan.

These cards really do make me happier.  Just knowing that people out there care makes a huge difference on my sad days.


Love Rachel


Card club still trucking
sarah
rachelupdate
Hello Rachel fans,  Sarah here.

It is a new year so I figured I just shout out and say that if you want to be one of the merry band of people on a rotation to send Rachel  a card every month let me know!

Cheers!

Sarah

Card shout outs
rachelupdate
Hello All,

Some more thanks.  My chemo friends are John and Bonnie Cleasby, so thanks to them for the venison.  Thanks to Molly for the bobbIe headed turtles; they always agree with whatever I say.  And thanks to Kevin and Helene for the rechargable handwarmers, I can't wait to use them.   got the cards up, yay!  There are lots of repeats in this bunch.  Shanks to Karin and Thiago, Rebecca D., Grandma Olive, Aunt Chris, Aunt Martha, Aunt Martha, Su, Emily, Sarah, Kevin and Helene, Annie, Molly, Grandma Olive, Grandma Olive, Grandma Olive, and Michelle and Andy.  


new chemo, not so bad but a wee bit scary at first
rachelupdate
Hello All,

Time for another blog update!  Rebecca Droke was my chemo hero this week, and it was wonderful to see and have her.  For those who don’t know, Becca is an old friend who adopted our family back in middle school and has been a good friend ever since.  However, we have lived far away from each other,  so we have rarely had the opportunity to spend so much time together.  This is another reminder of how the stupid cancer thing has become an opportunity to become closer with my friends and family.

As you might remember, last weeks chemo was the first iteration of taxol, a new chemo drug, with a whole new suite of side effects.  As such, I was pretty worried about it, and it turned out, some of those fears came true, but don’t worry, all ended well.

Chemo day started out well with a good blood draw and easy IV stick, but the easy train got derailed pretty quickly after that.  Joan (the Nurse Practitioner) had warned me to alert the chemo nurses if anything felt strange after the chemo started, and I started to feel strange about 5 minutes after the chemo started.  By strange, I mean, really hot, and heart pounding and a face that became red like a tomato.  I told Becca that I was feeling hot, she noticed the beginning of the redness, and told the nurses that I was turning red, and then five nurses descended on me.  They turned off the chemo, at which point I started returning to normal color.  They also administered IV benedryl and cortisone, I proceeded to eat the rest of my pretzels, and they called Joan to see what to do.  The answer was wait and then try the drug at half the rate and see if I still reacted.  Well, I reacted again.  So there was another call to Joan, and the answer was wait some more and then start the drug at ¼ the rate.  This time, I managed not to turn red.  So they then slowly stepped up the delivery rate.  At each step, I felt a little funny, but not too bad.  And then finally, after 6 hours, I was set free from my IV tether and allowed to go home. 

While the allergic reaction was pretty scary, I was sure that they would be able to handle it.  I was more worried that they would have to stop the chemo entirely and I was really relieved when I stopped reacting.  Even though it meant that we didn’t get out of there until 7ish.

Becca was sure awesome during the whole thing, she didn’t freak out when I started turning colors, just went and got the nurses and she stayed calm during the nurse invasion, and she stayed patient during the long hours of waiting that proceeded.

I have been weathering these new side effects pretty well.  Friday I felt totally fine (and becca and I went on a walking spree around K-zoo), but then Saturday the aches, fingernail pain, and skin hurting started.  Fingernails and skin have returned to normal, and the aches are slowly subsiding.  The neuropathy hasn’t started yet, but it isn’t expected to.  I have been dropping and knocking things over a lot, but who knows if that is new.

Fortunately, nausea is not one of taxol’s side effects, so I have stopped eating like a three year old.  I have gained a fair amount of weight on the AC portion of my chemo regimen and lost a lot of cardiovascular capacity.  I am hoping to address both of these problems by eating better, getting on my bike (soon to be put on a bike trainer), and skiing once the snow finally comes. 

Shout outs begin with thank yous for venison, thanks to the anonymous KBS hunter who donated a deer to me, my parents and I will be butchering it later this week.  Thanks also to Idelle for donating her garage and Mark Williams at KBS for arranging logistics of getting the deer to Idelles garage, thawing it, and hanging it.  Thank you also to my chemo friends, who brought me about 10 pounds of venison.  How they managed to remember my name and find me, I don’t know, but what a lovely surprise!

As a special winter treat, my parents are coming out to see me at the end of this week.  We have some adventures planned, the deer butcher mentioned above, the creation of  some pho, and a wintery hike are all on the agenda.

Photos of cards and shoutouts will have to wait as they are at home and I am at work.

I hope that you have a fantastic Christmas. 

Love Rachel

on being sad (and shout outs!)
rachelupdate
Hello All,

Sorry about the long delays, it has taken me a while to recover from my Thanksgiving trip and this last chemo.  I have been feeling down this week, so here is a little rumination on being sad.  Don't worry! I am feeling a whole lot less sad now.

On being sad.

You might think that I am always a bastion of hope and cheer, but in truth, I get scared and sad.  The reality of what I am currently dealing with (i.e. the physical depredations of chemo) and the possibility that I might die of this cancer at a fairly young age never go away.  Usually I am pretty good at reminding myself that the chemo will pass and that the future is unknown for everyone.  I tell myself that all I can do is live my life the way I want to, and surround myself with people and things that I love.  This is what we should all be doing, after all.  However, sometimes, those fears about dying a long painful death and leaving a big empty hole in the hearts of my loved ones refuse to be placated.  This week they were very present and strengthened by Elizabeth Edward's death.  I, ineffectually, had been trying to distract myself from these fears, compulsively reading the NYTimes and the Washington Post, checking Facebook and napping, but the tears were right there, waiting to burst out.  Finally, I let go, acknowledged that I am scared, that it is really exhausting carrying all of the uncertainty of the future and the reality of my mortality, that it isnt fair that I have to be so brave all the time.  I did some good crying.  And I feel better.  Sometimes just acknowledging emotions is all it takes to make them feel less pressing. 

The reality of my life hasn't changed, but today I am more at peace and able to enjoy what I have right now, which is a lot.  I have wonderful friends and family that care and communicate their love to me, I have a boyfriend that watches disney movies with me (and sings some of the songs too!), I have an apartment with heat, I have a work community that is trying to turn me into a whale with their generous and tasty food, and it is snowy out and more snow is coming.  Yes, it would be grand if I didn't have cancer, but life isnt fair and all you can do is make the best of what you have.

I know that sharing my sadness can make you sad too.  Sometimes life is hard and hurty.  A common response to these feelings is to proffer reassurances that you know that I will beat this.  However, nobody knows the future. If you catch me in a sad moment, helpful responses are those that let me know that you care and are concerned and want to help in whatever way works best for you.

And now some shout outs:

(not in the right order)
Thanks to Grandma Olive, Jacquiline D, Wendy, Kathryn, Ellen, Jessie, Nina, Calley, Adam and Erin, Kristiina, Zach, Karin and Thiago, Karolina and Dan, Nina, Calley, and Megan.

Thanks also to Jasper and Maria whos cards failed to make it into the montage.


I also got a lot of packages these last few weeks, thanks to Wendy for the hat, Emily and Sally for the window hanging (it is in the window now!), Adam and Erin for whatever it was that came with the card that my mind is totally blanking on but I know that I appreciate and enjoy, Lisa and Chris for the AMAZING chocolate collection, holy cow, Maria for the mix CD (it is in my car radio), Kathryn for tea and chocolate (chocolate all gone), and Lauren for the Apple Koos (it was sooo good to see you!!).  Thanks also to Molly for the bike trainer, which I will figure out how to set up so that I can ride inside.  And thanks to Grandma Litty for the earings and scarf and potholders.  I heartfully apologize if I have left anyone out.

Love Rachel



?

Log in