The Day After the Last Chemo

Holly took pictures of the last bag of chemo, that infused from 8p-10p last night. Holly also took a few photos of me in my hospital room, while I was waiting for the last chemo to begin, waiting to walk out of the hospital into the cool night, and waiting to face the next phase of "after cancer." That will be close follow up first for my blood counts while they plummet from the drugs and then rebound as the bone marrow rejuvenates itself. My long term follow up will involve frequent blood tests to monitor my blood counts as well as bone marrow biopsies every 3 mos to check for rogue leukemia cells, if they try to come back. I know from the breast cancer treatment 2 years ago, that the mindset for this next part is different. You have to learn to live with uncertainty. You have to go on and live as if nothing has happened or else you just get bogged down in worry, dread, and fear. I found that I was pretty good at putting my diagnosis and treatment behind me; I don't expect this time to be any different. Going back to work & feeling healthy again help alot to normalize things and allow me to think about the future the same way everyone else does-you know with just enough denial to forget about the fact that we are all going to die someday. That's the thing about having a life threatening illness; you can't forget, you can't deny, you can't pretend-it's in your face pretty often. I didn't dwell on it much, and I certainly maintained and maintain lots of hope for the future. But really, none of us knows what is in store for us, how long we have to live. Having cancer is a big arrow pointing toward that even if you'd rather not go there.

I had some visitors to my room yesterday while I was waiting for my last chemo. Jennifer, the nurse who works with me at my clinic, and Brandy, her daughter came by. Brandy is in her early 20's and was diagnosed with Hodgkin's lymphoma about 7 months ago. She finished 6 mos of standard chemo treatment for her type of lymphoma but has failed the regimen. Her most recent PET scan showed a lung nodule which turned out to be more Hodgkin's cancer cells. She is now going to need a bone marrow transplant so that they can use even stronger chemo drugs to get her into remission. She seemed upbeat and rugged despite the news and being in the hospital herself for chemo. As hard as this is for me, I can only guess how difficult it must be for someone so young. Cancer never is fair, by the way. I know the docs in the bone marrow transplant unit will take great care of her, and she'll do well with her attitude. But you wouldn't wish that tough, tough course on anyone, especially after she's already done 6 months of chemo.

The other visitor was my old friend Susan from undergrad. She was at Duke to give a talk about the FDA's position on new biologic molecules that are being invented to treat cancer, MS, rheumatoid arthritis, etc. Most of these drugs are high tech designer antibodies, and currently there is no avenue for approval of generic versions of these medicines. Susan has a PhD in immunology, and her job at the FDA involves inspecting and approving these new types of drugs for human use. Big job, important job, tough job. But she is a tenacious, outspoken, and confident woman, always has been, and she is just the person I want going toe to toe with the drug companies to make a safe and effective medicine. She still has family here in Durham as her parents live in the Duke Forest neighborhood. I am sure it is a thrill for her parents to have her down to give a talk, not just because they are proud of her and her accomplishments, but also because she brought her 5 yo twin boys with her (she is also a twin by the way). I have to say it was like a time warp seeing her-she looks the same, barely any older, and seems much the same temperament wise. We hadn't seen each other since she lived here to do her MPH in toxicology at UNC, and I think that was the early 1990's.

My stomach today is a little icky as it always is after my chemo day. I am also a little dizzy if I stand up too fast, but they gave me blood before I left the hospital and that is helping me to feel a bit more energetic than I might otherwise. I plan to take a walk later while Holly goes off to bicycle with Amy and Sandy. I'll try to eat what I can, though I don't have much of an appetite with this queasiness. I don't head back to clinic until Tuesday morning to get my counts checked; I'm planning on an easy week.

The Last, Last Day

I am very excited that today is the last day of my 4th treatment and hence ends the whole shebang. I have had a rough time with my stomach this cycle with lots more queasiness and sometime nausea. I chalk it up to the accumulated effects of getting high dose chemo, twice a day, for so many cycles. If you count the original 7 days that I got the other chemo regimen, I have had 25 slugs of mean drug. Since I've been on the consolidation rounds 1-4 that are ending today, I've had 24 treatments barely separated by 3-4 weeks. That is precious little time for my stomach lining to heel much less everything else. But I wanted to push on as fast as they would let me go, so that my bone marrow could rebuild over the holidays and so that I can return to work in January.

Thanksgiving is my absolute favorite holiday, and I want to be as well as possible then. I love our tradition of joining friends for a hike in the day and having a big potluck dinner with Turkey & all the fixings in the early evening. It is my idea of the perfect holiday-a hike, hanging out with friends, good food, good pies, and fellowship. I do hope that we get to go to Asheville to celebrate it with our friends there. We haven't been able to see much of them since June when I was diagnosed with this leukemia. It would go a long way in making me feel like my life was normalizing again.

I never guessed that it would take this much time & effort to treat the leukemia, and I certainly didn't anticipate being out of work for 7 months. There are some days, looking back, when I was probably strong enough and clear headed enough to work at my clinic, but then a day or two later, I'd go back into the hospital for the next round of chemo. I have learned to be patient with all of that and just accept that I'd get back to a normal life in due time.

My hair has started to come in a bit thicker and a bit darker, but it is still more like fur than hair. It reminds me of baby bird hair. I still have lots of scalp visible, and the hair I do have is a curly mess. I'll give it some time after this last treatment to declare itself. If I don't like the odd mix of colors and lengths a month from now, I'll get it cut to even it out and start fresh without all of that chemo changing the hair follicles. I'd like to have my thick brown MaMa hair back. Then all will be recovering as expected.

I do have more work to do to get over this leukemia and especially to rebound from the low counts I will have for the next several weeks. But I do want to thank each and every person who has sent me good energy, or prayed for me, or drove me around, or stopped by with dinner, or brought me books to read in all of my downtime, or wrote fun & funny messages to me on the blog, or stayed with me when I needed company & help. I could not have done this without all of you. I owe you all a big debt of gratitude. I am so lucky to have many, many great friends, co-workers, and family members who stepped up to help me through this difficult period. I hope that I never have to do it again, but I know how terrific my support system is.

When I get out of the hospital this time, I'll set up some goals for myself before returning to work. I need to clear my mind and get rid of this chemo brain that is making my thinking fuzzy. I want to review my spanish which I haven't used much in the last 7 months. And I'd like to get my stamina back up to long runs that don't leave me on the couch recuperating all day. I have some medical knowledge I need to brush up on too before I start seeing patients again. And we want to take a trip to N. Calif to visit our pals Peggy and Naomi. Seven months is a long time not to be able to travel far from the hospital or clinic. We need to remedy that, to celebrate arriving at the end of this long journey.

Photo: more yellow leaves on my favorite ridge, Sunset Mtn (where I do my 10 miler race in May or June)

My hopes for the next 2 months are to get better, stronger, rebound my blood counts and immune system to the point of being able to work again. I look forward to getting rid of my chemo brain, the confusion or forgetfulness that comes with taking all of these high dose toxic medicines. And I can't wait to get rid of my chemo tummy, which is far worse this time than the last few cycles. I want to get my body and mind back up to speed so that I can handle a full day of work and working out.

Holly's Addendum:

I wanted to also extend my deepest gratitude to everyone who provided such wonderful support.

Thank you to all our family members for the many calls, the consolation, the visits, cards, meals, gifts, and sustaining love. (Quigley, Gracie and Henry also thank you for the generous helpings of pets, pet food and treats!). An added bonus for me has been to get to spend more time with Teresa's family; it's been a real treat for me. Thank you to all our friends and colleagues who've been there with well wishes, dinners, rides, visits, encouragement, and to listen. Thank you to all the wonderful health professionals at Duke, UNC, and Piedmont for their care and advice. The caregivers and staff at the Adult Bone Marrow Transplant Unit and 9th floor are truly the best, truly exceptional.

We have had the support of dear, wonderful people near--and farther than we could imagine! It's meant so much to have you in our lives and I've been touched by your support beyond words. I will walk out of Duke later tonight with Teresa into the balmy November evening knowing how blessed we've been, how very fortunate to have you all share this journey and to have had your help to get us through it. Love-Holly

A Bright & Glorious Day Out There

Looking out my hospital window, it appears to be another pretty day. The trees off in the far distance sure are magnificent. I've had a good night as they bunched my blood pressure checks and lab draws and weight checks so that they wouldn't be waking me up every couple of hours. It makes a difference, especially between 12 midnight and 8am. I am waiting on Holly to arrive and say hello before she takes off for work, and I'm waiting for the team to round on me, giving me the okay to go home with a Daypass again. My friend Sandy who works in IT here at Duke has graciously offered to drive me home when/if they spring me. Her office is just across the street, and I could even wave to her from my window.

Some of my counts have begun to fall mildly with my hemoglobin down to 8.4 today. If it drops to 8.0 or below, they will give me a blood transfusion tomorrow. I hope they will just go ahead and do it, since the first week after chemo is tiring enough as it is. Having a little extra umphf from blood would help.

Not much else to report today. Just trying to keep it all quiet and easy.

Photo: Trees in the mtns on my favorite ridge, Sunset Mtn

Another Day for Chemo

I just woke up and I'm waiting for Holly to arrive for her morning visit. My stomach is feeling a little icky from the chemo on Tuesday, but I'll get 2 more doses today and be well on my way to done with this cycle. Tuesday when I got it, I just slept to pass the time. Yesterday I got to go home on a daypass and I walked around Hillsborough then took a nap in the afternoon. I have been more tired this cycle with all of this chemo catching up with me. But tomorrow I'll likely get another daypass and then Saturday I'm done after my 2 doses. That will feel good.

It looks like a gorgeous day out, clear sunny, and warm. Maybe I'll be able to take a walk outside between chemo doses.

Photo: The view of downtown Asheville from our backyard. Soon all the leaves will be off the trees and you'll really be able to see the pretty skyline.

Obama

Holly and I stayed up to watch the election results last night. We had big wins for our candidates in NC, but the national election is still too close to call for Obama or McCain. We did elect a democrat governor, senator, lt governor and maybe even Obama. I haven't looked yet to see if my progressive candidates won for Asheville too-some big zoning and planning issues coming up for Asheville with all the new growth to the area.

I got my first 2 doses of chemo yesterday as promised. I took all the anti-nausea meds they would give me, including the ativan. They made me sleepy in the day and it was grey and drizzly here so I napped in the afternoon. Why not? What a better way to pass the time while getting chemo.

My counts looked good yesterday-everything all worked back up to normal except the hemoglobin at 9.5. That one is always the last to hit normal, but it doesn't keep them from re-starting the chemo of course. It will be dropping within the next couple of days anyway.

I've already done my workout on the stepper here, and I'm waiting for Holly to arrive for her morning visit. If I get a Daypass like I should, she'll take me home or I'll call my friend Sandy, who works just across the street, to run me home. My stomach is a little queasy this morning after the chemo, but otherwise I feel pretty normal.

Election Day

I voted early, but I hope that all of you take the chance to vote if you haven't yet.

I just finished checking into my new room in the hospital. They gave me a different room this time; I am in room #9213 (phone 919-681-9213). My window looks out over the VA hospital and the woods off in the far distance. The leaves are changing here too so the view is quite pleasant. I am sitting in the recliner in my hospital room (not Duke blue, more of a heather green) writing while I look out the window at the drizzling rain and the far off leaves. The view will be terrific when it stops raining and the sky clears.

The doctor team has already come to round on me, and the orders for my chemo have been placed with the pharmacy. I'll be starting my first dose of chemo at 12 noon, lasting 2 hours as usual. No wrinkles, less nausea, that's my hope for this cycle. They say the treadmill is broken (again) but have called someone to come fix it. I did a nice long row this morning before I came in since it was raining. Holly shared her coffee with me from the cafe downstairs since my stomach won't be able to handle it for another 4 weeks after today. Soon it will taste bad again and upset my stomach. Tea is so nice; it tastes good and is milder for my tummy.

I'd love to write all kinds of profound things about this being the last round of chemo. I'd wax on about what it means to me and how I am hopeful for the future. But honestly, the biggest thing I feel is relief-to be finishing a long, tough course of treatment. I hope that I never have to do this again. I hope this is the end of cancer for me. I hope that Holly and I can get on with our lives and only have to worry about the occasional bone marrow biopsy. We've been through alot, not that we don't have the strength to handle more if that is necessary. But we have done enough, and I'd like us to have a break.

I saw my doctor in the clinic yesterday, and he said that for the next year, I will need to have a bone marrow biopsy every 3 months. There is no other way to look for the leukemia since it starts with the white blood cells in the bone marrow. If I did have a relapse, they would give me some chemo again to put me in remission and then do a bone marrow transplant. Neither my doctor nor I want that, obviously. I want to be in the 75% of people cured by all of this tough stuff I've been doing since June.
Photo: Blue Ridge Parkway

Beautiful Fall Leaves

The photos won't do it justice, but the leaves were at peak this past w-e. The two big tulip poplar trees in our front yard were covered with big yellow leaves, and my neighbor's oak trees were as well. The colors had really brightened in the last week to include lots more yellow, orange, and bright red. I did get the chance to drive on the Blue Ridge Parkway, and the trees there were just gorgeous. The weather was also very mild and sunny with high temperatures in the 70's.

I had a very good w-e before starting chemo again tomorrow. Billie and I met up at the French Broad Brewery to hear our favorite band, Brushfire Stankgrass. They play a mix of bluegrass/newgrass/ and jam band tunes a la the Grateful Dead. They have a lot of fun playing together and even came in costumes this time. Lots of the crowd showed up in costumes too since it was Halloween. Billie and I made it over to the Asheville Pizza Co for dinner and had, you guessed it, pizza. Yummm.

Saturday I did a nice run up the hill behind the house and on to Beaver lake. The birders were out at the Audabon park stalking the herons and ducks. A few of them had spotting scopes and cameras with big long lenses. Must have been some special birds in the park this w-e. I don't know what they were though. I saw some small birds flitting in and out of the brush on the banks, but they were too quick for me. As usual, I did get to see some woodpeckers in the high trees. I always like when I can see the woodpeckers. They are my special bird. The hobby group that sails those small remote controlled sailboats were on the lake too. I tried to get a good photo of them (see above) but it was a little far for my lens.

Several of us met up at a mexican place Saturday night for Jan's birthday. I got to see Ellen's new Fuji finepix camera. It has some kind of big lens on it, a wide angle zoom I think. Needless to say, it takes very sharp pictures. She and Jan had been out hiking and had some photos from the Bent Creek area, including a precious little nest that they moved all over the place and photographed. I'll never forget the year Jan turned 50, and we all met up at the Jerusalem Garden restaurant wearing our "I survived Jan's 50th birthday" T shirts. Seemed that Jan and everyone else started to have musculoskeletal injuries or falls or surgeries that year. Fortunately our gang will still get to celebrate a few more 50 year old birthdays since Holly, Ellen and I are still in our forties.

Donna Z invited me over on Sunday for some coffee and banana bread. She starts her new job at Highland Farms nursing home today; I know that she is happy and relieved to be working again after 4 months out of work. Her big news is that her Mom just got engaged to Al. They are to be married Feb 14th. Her Dad has been dead 8 years now. Glad that her Mom can be happy with someone again especially at her 78 to his 82.

Well I'll see my doctor later today to say hello and let him do the paperwork to get me admitted tomorrow. Then it's into the hospital tomorrow morning for the 4th and final round of this high dose chemo. My supervisor from work emailed me last week to check on the timing of my return to Piedmont Health Services. They are implementing a new Electronic Medical Record in mid January so it should all work out perfectly. Glad they still have room for me back in my old clinic. You just never do know after 7 months and all that has happened in this economy.

Photo: Beaver Lake with the little sailboats