February 12th, 2015 §
Once again, it’s been a while since I’ve updated. Somehow most of you know that with me usually no news does not actually equal good news. Before I give an update I want to remind readers that I do update the blog Facebook page (click here to reach it) with short medical updates more often these days if you are interested.
Most of the last three weeks since I last wrote have been dealing still with swelling and blood count issues from radiation and from the extensive disease in my liver that we are working on with the radiation and with chemo. I’ve needed numerous transfusions of red cells for anemia and quite a few for platelets which have really come under attack. We have been taking a break from the Epirubicin and I got a dose of Faslodex (I had it last year as well in a clinical trial with a trial drug, this month I am using it with a daily pill, Letrozole). Rather than being cytotoxic chemos (traditional “cell-killers”) these are anti hormonal agents. We are just trying to let my body recover now for a few weeks.
Last week my abdomen grew and grew with fluid from the liver and overall inflammation. By the end of the week I had an abdomen the size I was when I was ready to give birth. The skin was painfully stretched. We needed to intervene. I went to urgent care for evaluation for a paracentesis (draining/”tap” of fluid). My platelets were too low. They transfused and I just made the cutoff. The process is pretty simple: visualize if the pocket of fluid is drainable (tiny pockets would not be) via ultrasound.
Three needles of increasing gauge are inserted to numb through to the pocket. A catheter is inserted and attached to a drainage bottle that has a bit of vacuum to draw out the fluid. Two and one half liters later we were done. It is a huge amount to see. I did have soreness at the site and discomfort from such a lot of fluid removal after. But this is a very common procedure with metastases to the liver (please, please remember: breast cancer that metastasizes to the liver is not liver cancer. Mets to the brain are not brain cancer. They are breast cancer cells that have moved in the body. There can be/are big differences in terms of prognosis, treatment, chemotherapy agents, etc).
Some patients only need a few of these abdominal taps. Some need them every few weeks depending on how chemo, etc. are working. Sometimes a drain is actually placed to allow a constant ability to remove fluid.
If you were following me last year you know I had a drain placed in my lung while in the hospital that accomplished something similar. I was fortunate to only need that one for a few weeks (I had already had a one-time tap on my left lung called a thoracentesis). For now there are no plans for a drain or other more serious interventions in my abdomen. Now that my potassium levels are holding steady we are using diuretics to manage the issue.
We are working on the plan for next week, it is likely that I will be going back to a chemotherapy called Xeloda (these are pills taken daily) for a bit because it is gentler on blood counts. I’ll update when we have a decision on that.
I’m weak, still unable to drive, or do much more than walk than to the bathroom or a car that is picking me up. I’ve had to adjust some things at home including bathroom rails and so on. Safety is most important and especially with very low platelets falls and any bleeding or injury risk is a serious concern.
I’m sure I’ve forgotten something (or things) but I do want to get this out today. I see snow out the window but I’m still focused on Spring. These hydrangeas in my room this week reminded me March is not far off.
Thank you to those near and far for all different kinds of support given this month with an extra shout-out to my wonderful team at Sloan-Kettering. If any of my doctors, nurses, or support staff there are reading this: you help make these tough days better. I value your care always.
January 17th, 2015 §
Hi everyone… finally an update. I know I have been quiet. As you probably assumed, it has been a very difficult month. I finished whole brain radiation (and I needed to add the C2 vertebrae) and liver radiation a month ago. The brain and liver were two week regimens each but the start times were staggered so it took three weeks to complete. I was having trouble with my magnesium and potassium levels and those needed to be addressed. As a result I needed to be at Sloan-Kettering every weekday for more than 30 straight days between radiation and the aftermath. It was quite a schedule.
In the last few weeks my problem became swelling (edema) from inflammation from the liver radiation. My abdomen was shockingly distended and that was causing me trouble with discomfort and moving around.
I have had fatigue but it hasn’t been the sleeping-all-day form that I was warned might happen with the brain radiation. Fatigue encompasses more than just “tiredness.” For me the fatigue has been more weighted on weakness. I have had a lot of trouble walking and doing steps. I’ve needed to use a wheelchair at SK for a few weeks now. That shouldn’t last much longer as I get stronger to walk distances again. But on the bad days I couldn’t get more than down to the car for my ride.
I started Epirubicin for my chemotherapy a few days after radiation finished in December. It is dosed based on liver function so the dose has been adjusted each week as we see how my liver is doing post-radiation. I was able to get three straight weekly doses. This current week has been my “off” week; my blood counts are low from three straight weeks of chemo (to be expected in anyone getting it) so a week off is always given for the body to hopefully make enough the replenishment cells of different types.
The magnesium and potassium as of this week are finally holding with home management and no IV supplementation. A helpful tip: the low sodium form of V8 has huge quantities of potassium. Most people think of OJ or a banana to supplement. Only 8 oz of it contain 900 mg of potassium. I drink a few a day, just make sure it is the low sodium version though.
I’ve now tapered totally off the very low steroid dose I had been on for months. Steroids can make your legs very weak if you take them for an extended period of time so it is good to be able to remove them from the equation.
I only needed to go to SK for one trip this week. Diuretics have helped with the edema, each day I see and adjust the dose. I do not have pain beyond what is caused by the fluid around the liver. I do not take any pain pills and haven’t needed them during radiation. I have not had any headaches or neurological issues yet from the brain radiation which is probably due to the fact that my lesions were so small and the low dose of steroids. I am still winning a bunch of my Words with Friends games too! The last time I was able to leave the house to go somewhere except to go to Sloan-Kettering was Thanksgiving. That boggles my mind.
I think this week has been a turning point. I am hopeful the major acute radiation effects are waning. No clue what lies ahead with the delayed ones but I don’t focus on that. For now I will be working on strength (after being basically bedridden for a month) and trying to get more function back. It is a process.
If all goes well I will start a new chemo cycle next week. Radiation effectiveness can’t be assessed immediately so we will do preliminary scans in a few weeks. (I finished on 12/19). Each day is different and I can’t predict how I will feel. But that seems to be the way life will be for me now. I long ago adjusted to that.
I am grateful for all of the support and concern shown over the last month from you, I understandably wasn’t able to return many messages. This past month was really about just getting through. The energy I did have was spent making sure the kids were able to maintain their usual schedules and we made it. Friends who have helped with rides and meals: thank you.
The poppy photo above is from my garden a few years ago… I’m already anxious for Spring to get here. xo
December 27th, 2014 §
Hi all, a short update.
I’ve finished two weeks of whole brain radiation (those two weeks had simultaneous radiation to my C2 vertebrae), and two weeks of liver radiation (one overlapping with brain, so all of this was 3 weeks of treatment). I have been overwhelmingly plagued with intense fatigue and other side effects (fatigue is the worst thing at the moment though).
I need to use a wheelchair when I go to Sloan-Kettering now. I’ve needed platelets and red cells once each in the last few weeks and have needed to be at Sloan for one half-day every weekday for the last month or so because my magnesium (despite daily infusions) remains critically low, which is a dangerous situation. My potassium has similarly started to be an issue as well. I get magnesium and potassium in addition to 1.5 to 2 liters of fluids as well each day because I have been having trouble staying hydrated with the radiation effects. Not enough energy here to go into why the magnesium is still an issue now.
Four days ago on Tuesday the 23rd, I began chemotherapy (4 days after finishing all of my radiation). We are starting a new drug called epirubicin which is an anthracycline just like the well-known adriamycin (it is also red like adriamycin).
So basically I’m spending a half day at MSK every weekday and resting (I’m basically bedridden right now) at home the rest of the time. I don’t leave the house except to go to MSK. I expect at least a few more weeks of this.
I’m thrilled that my family has gone away on vacation starting today and they will have a week to ski and be with cousins and grandparents and get a fun break while I recover here. I insisted that they go; it is so important for me to know that our kids and my husband can have some vacation time and get a break. It is not easy to be a family member/caretaker under these conditions so it gives me a lot of joy that they can have a change of scenery. I have a family member staying with me since I can’t be alone and so that will work out just fine in terms of appointments and help with my needs.
I get foggy quickly so I hope this post made sense!
Many thanks as always to those who support me daily with tweets, emails, rides to appointments, donations to my research fund, meals, etc. And to any MSKCC staff who are reading this: you know how much I adore you.
I am grateful that you all continue to join me here. Wishing you a happy and healthy new year if possible and we’ll keep on going into 2015 the best we can…
xo,
Lisa
December 3rd, 2014 §
I realize it has been a while since my last update. Things have been very busy with getting my whole brain radiation going. I’ve spent so much time at Sloan-Kettering… yesterday I was there for 7 hours. By the time I get home I am too exhausted to write. But I do want to let you know where we are this week.
The first thing I want to comment on is the death of my dear friend Ann Gregory. She died the day before Thanksgiving. Her obituary appears here. Some of you came to know Ann through Twitter or through my stories about her in person or through her comments here on the blog. If you did get to know her and chat with her on Twitter over the past few years, you were lucky.
Ann was the strongest person I know and had numerous diagnoses of cancer throughout her life including leukemia and squamous cell carcinoma. She was quite stoic and, like me, was always okay as long as there was a plan for what to do. We spent hours texting each other (often those hours could be in a single day, depending on which one of us was sick or well that day or what phase of treatment we were in), always supported each other, and she was always a valuable source of information for me. I have missed her so much in the week since she has died. We did not want to leave each other. Four days before she died she texted me to say her goodbye. I will never delete those text messages and I am so sad that I have to do all that I have to do without her. My heartfelt condolences go out to all of her family, especially her husband, Chris, and her legions of friends. Her blog appears here. I just can’t do her life and personality justice here right now, but there is a gaping hole in my life now, and Ann is the precise shape of that hole.
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Last Friday I did my mask-fitting and simulation. The mask-fitting takes about half an hour and is pretty unpleasant. The mask is molded to be skin tight on your face, to the point of leaving indentations when removed. It is rigid plastic, not flexible mesh. There are no eye holes or openings for your mouth… your chin is jammed up so tightly that you couldn’t open your mouth if you wanted to. I cannot speak at all when it’s on and attached. Obviously, this is vital to making sure the radiation is going exactly where you want it to go, and not where you don’t.
Even though the fitting and simulation take a while, each radiation session itself is quite short. After confirming the patient’s identity with name, birthdate, and a photo, you lay down on the table, they hand you a foam ring to hold on to across your chest so your arms are relaxed and easy to keep still, and a foam wedge is placed under your knees. Then the aforementioned mask is placed on and with some tugging and effort, attached firmly to the table you’re on. The photo gives an idea of what it’s like.
The technicians leave the room and the linear accelerator moves into place. The beam goes on and I can see even through my eyelids a very bright light with a bluish cast. It is only on for less than a minute and then it moves and does the same thing to the other side of my head. They say there is no smell to radiation but I always smell something. I have read that others do, too. I can’t describe exactly what the smell is. I’m working on figuring it out. I’m usually focusing on relaxing and not getting claustrophobic so I haven’t solved the mystery yet. It doesn’t quite smell like burning hair but maybe that is part of it. After the actual beams are done then the techs scurry back in right away and release the mask from its mooring. That’s it.
As I said in my last post, side effects don’t usually start for brain radiation until closer to the end of the 10 session series. So, next week I will see more of the fatigue and the start of hair loss. Memory loss takes a bit longer to occur. There are many things that might happen including headaches and nausea and confusion and blurry vision but those are not as common. I did not have any neurological symptoms before starting radiation so that is a good thing. I have some nausea and loss of appetite but that is primarily due to the liver situation. An inflamed liver causes pain, nausea, and so on.
I did my liver simulation for radiation yesterday. This is actually more complicated for the radiation oncologist to map out than the brain because part of my liver already received radiation when I had the radiation to my spine in January. For this reason, she needs to make sure it doesn’t get any additional radiation this time. None of the 13 or so tattoos (permanent ink dots placed by a needle under the skin to mark where the alignment should be for the laser beams for radiation) that I had from the spine and pelvic radiation in January were in the correct spots for the liver so I got about 6 more of those. The radiation oncologist will focus on the right lobe of the liver, but even that is tricky with the kidney and bowel in range.
They will work to map it this week and I will start liver radiation next Monday. That means this week (12/1-5) will be brain only, then one week (12/8-12) of both brain and liver, then one week (12/15-19) of liver only. Then I will wait a few days and begin chemotherapy again. These are hard days ahead. Side effects will be kicking in right as I go back to chemo. Christmas week will be the peak for all of this to hit the fan.
I’m continuing to get IV fluids 2-3 times a week and am also getting magnesium infusions because the most recent chemo continues to cause my magnesium level to stay far too low. Even though I am not getting chemo right now (in this case, chemo and radiation can’t be given together even though with some cancers they are) I am still having lingering effects from the last round of Cisplatin. The magnesium infusions add about 8 hours a week to time I need to be at MSK (Memorial Sloan-Kettering).
There really isn’t time to do anything else besides be there and rest at home. I’ll be there every weekday for the next few weeks. I’m managing okay and know it’s going to get far worse before it (hopefully) gets better.
I think this should give everyone a pretty good timeline of what I’ll be doing in the next few weeks so that if I can’t update much, you’ll still know. I know people have questions and I will do my best to answer them, it might just take me longer than usual.
Thanks for all of the support, as always.
November 24th, 2014 §
The brain MRI on Friday unfortunately showed that the metastases are to my brain, not just my skull. There are many tiny malignant lesions in the brain (imagine salt sprinkled onto a bowl of popcorn) so I am not able to do focused gamma knife radiation to shrink them individually. I will need whole brain radiation to try to shrink them all before they cause me to have symptoms.
Whole brain radiation will radiate all of my brain tissue, healthy and malignant. It is usually given in a series of 10-15 sessions, every weekday. It has side effects both short term and long term. In addition there is a claustrophobia-inducing session of mask-fitting where a mold of the face and head must be made for the patient to wear during radiation treatments to immobilize them. Here are some photos that one woman made of her WBR process.
I am meeting with the radiation team on Tuesday to get all of the details and do the scheduling. I haven’t met with them yet. I believe the goal is to start next week. I do not yet know what this means for the radiation procedures I had scheduled for my liver. I will also be continuing with chemo as much as is possible during this time. The most serious side effect will be fatigue. As in: sleep 20 or more hours a day fatigue. Can’t get out of bed fatigue. So I will need to make arrangements to get more help here at home to help with the kids and with driving.
For now that’s all I’m going to report because I want to see what the team says about my particular case and let everyone know the plan for me. It’s obviously not the news I was hoping for. But as always I will do what needs to be done to try to manage it.
November 19th, 2014 §
Nothing poetic here today. Just a report.
The past week was already one of the most challenging I’ve had this year: my first infusion last week of a triple dose of Cisplatin had me down for the count while I was also digesting the news of the growing liver metastases and what needs to be done to try to reduce those. This week I had a PET scan and CT angiogram of the liver scheduled to assist in my pre-surgical requirements for the Y90 Yttrium radioembolization I talked about in my latest update (the Y90 process is also called SIRT: selective internal radiation therapy).
As a result of the PET scan we got some additional information and what we got was not good. Obviously that isn’t a surprise given that my bloodwork had already told us the prior chemos had stopped working and the cancer has been progressing. The PET confirmed that my liver is an area of increasing trouble with tumors multiplying and growing in size. Not surprising. Also as we suspected, the fluid around my heart appears to be malignant. Then there were surprises: apparently at least one malignant lesion in my brain and new cancerous areas throughout my skull and jaw.
The PET is not a good way to identify exact size and precise location of specific tumors, however. Therefore, on Friday I will need a brain MRI to get good imaging and see exactly what is going on. Then we will see what needs attention, what is watch and wait. Not all brain lesions should be radiated with gamma knife surgery immediately; it is a risk/benefit assessment when you’re shooting radiation into the brain. Obviously, though, gamma knife surgery is a treatment that will be considered once we have details on what we are looking at.
Skull metastases, despite sounding scary, are just bony mets. This is what systemic chemotherapies (treatments that are given orally or through IV that work throughout the whole body) are designed to work on. Brain lesions often need different therapy because many/most drugs do not cross the blood/brain barrier (or do so in an indirect or imperfect way) and so are not effective in counteracting metastases to the brain. Metastases to the brain often require a change in therapy to address this issue.
For now we proceed with the liver plan because that is a local therapy designed to work on just that issue. It needs attention now and isn’t changed (yet) by this new information. As for the rest, I will just have to see what the brain scan shows and go from there. It will be a long week of tests and waiting. Sometimes I wonder how I walk around knowing what is in me and what it is doing to me and still manage to get through the day. I have seen the roller coaster of what this disease does. Some things that sound terrifying end up being able to be managed.
We will be scheduling chemo intermixed with my liver procedures (day before, or maybe a few days after), adjusting the chemo doses to lower ones so that there is time for my blood counts to rise in the time needed. It will be an art and science to balance. By then we will know if the Cisplatin is working. I can only hope that it is and that it will. We have a few choices lined up for if it isn’t.
While all of this goes on I still search for that laugh, I still appreciate the small things.
Most people know my “bit of beauty” tweet by now (“Find a bit of beauty in the world today. Share it. If you can’t find it, create it. Some days this may be hard to do. Persevere.”). Judy Clement Wall has made this into notecards and a print and is donating all funds from sales through 2014 to my research fund at Sloan-Kettering. If interested, go here to her Etsy shop. I know that this is the quote many people will remember me for most. But I have another tweet I like to send out. Some days this one just feels right. It is:
Make the most of this day. Whatever that means to you, whatever you can do, no matter how small it seems.
For now, and again, I say: Onward.
(A housekeeping note: for anyone who has signed up to receive these posts by email but sees that posts aren’t arriving: you must confirm your subscription by clicking the verification option in the first email you will receive. If you have been wondering why you aren’t getting the emails, please re-sign up from the home page at www.lisabadams.com, upper right corner, and make sure to verify. There are loads of unverified requests and only you can do this part!)
November 2nd, 2014 §
Last week didn’t quite go as planned. I was hoping to post more pieces here to finish out October with some of my favorites. I will still try to get those up in the coming weeks. What prevented me from doing so was a week that became dominated with medical appointments.
Monday I saw my cardiologist to try to get some information about some symptoms I’d been having. My echo (and later in the week, the CT scan) showed there is some excess fluid around my heart. For now it is not causing any effect on heart function but we can’t rule out that it is a problem. I’ll have to repeat tests in a few weeks to try to see if it grows in volume (this would indicate a more sinister issue, and we would need to rule out a malignancy). For now, though, that goes on the back burner.
Tuesday I had bloodwork and IV fluids. The bloodwork is still a bit unclear about if the current chemo (Navelbine) is working. The rise in tumor markers is slowing but we need some definitive results this week, I think, to feel confident in interpreting them. The bloodwork also revealed I was anemic again, so on Thursday I went to New York City and got a transfusion of two units of blood.
On Friday I had a CT scan to compare to my last scan and help us make decisions about treatment. The CT showed both some good news and some concerns. While the lymph nodes and malignant tissue in my chest have resolved (chemotherapy in the last six months has worked and reduced those areas), my liver unfortunately shows two tumors.
The best thing at this time would be to biopsy portions of them (to gather tissue for future testing; my cancer has rarely been in areas that we can actually get samples, so this presents a rare chance to grab some) and also do ablation on them. Ablation is a localized procedure that when successful, destroys tumors of a particular size with very few side effects.
So, a lot is up in the air at the moment.
Because it is only Monday morning I don’t know what this week will bring in regards to chemo. We also don’t yet know if the interventional radiologists will decide that I am a good candidate for the ablation. For now, I wait.
Palbociclib, a drug I received through the expanded access (formerly “compassionate use”) program from Pfizer should arrive this week. That process took approximately 9 weeks and usually takes longer than that. I am fortunate my oncologist kept the process moving in such a timely manner (all applications and documents for such use must be done by the physician, not the patient).
I’m not feeling that well and have been primarily staying home for the last month. Now that I think about it, though, I’ve been basically staying home for the last ten months. Many days my half hour in the morning driving the older two kids to school is my only outing of the day. But I am patient.
At this point the options are still very reasonable and typical for this stage of the disease. I’m waiting for the next treatment proposal and then onward we go.
March 4th, 2014 §
Hi everyone, an update to briefly say hello since my posts are still infrequent. It’s been about three months now since this particular acute metastatic breast cancer episode started. First I was stuck at home in pain with tumors in my spine and hips before and during the holidays. Then I was in the hospital for three weeks at the start of 2014 getting pain under control and having two weeks of radiation. Now I’ve been home for another six weeks since leaving the hospital.
After such a long period of time many people will start to assume you “must be back to normal by now.” Each day they anxiously wait for news that someone “feels better.” It doesn’t work like that all the time, just the way with metastatic cancer you don’t “beat it.” A good day or two may come, but they are often followed by a bad one, or two, or three. Add chemo to the mix and you start to realize the good days are relative and elusive in incurable cancer. Support is always so appreciated as the days, weeks, months go by. It’s friendship for the duration.
There are many situations where isolation may be a real danger including examples of infertility, chronic illness, and grief. Those who must deal with these problems start to feel isolated. Additionally, they may start to actively separate from others when they feel that life is just moving on without them. As time goes on, they may hesitate to talk about their problems because they fear that friends will have grown weary of hearing about it/ still can’t relate to it. More and more, they keep these things to themselves. This leads both to further isolation and also the faulty notion from their friends that the person is “over it.”
The truth is that it’s very hard when difficult situations of all kinds linger. I think we all do better when tough times are brief. Being in one of these situations has shown me the depth to which this is the case.
Today I had to miss Tristan’s Spring music show at school. It broke my heart to tell him I couldn’t attend. They were able to videotape it and I know we will watch it together and have a special time doing that. If it were just one thing it would be different. But as any parent can imagine, saying, “I’m so sorry but I can’t…” again and again for months is difficult. The truth is that if I knew it were temporary it would be easier. But I know that there will be more and more things I can’t do with the kids. And that’s what weighs on me: this thing is part of a whole.
I tried driving last weekend but unfortunately, for now, the verdict is that I am still unable to do more than go to the bus stop at the end of the street if needed. So I continue to be housebound.
I’m working with my doctors to adjust my medications and try to manage the vertigo, sedation and pain. I am using less pain medicine (hooray) but unfortunately I still feel so rotten I sometimes can’t get out of bed and most often can’t go anywhere except to chemo. It is a cruel balance. This weekend I was stuck in bed for three days. It saddens me to lose so much time.
I still long to write here more. I miss the creative part of my brain working the way it used to. I miss poetry and photography and so many things. I will bring them back though! The orchid photo above is one I took in the kitchen this week. My friend Alex brought me lunch and a beautiful potted orchid. I even ordered daffodils with my groceries this week to remind myself of the garden outside and what’s waiting under this snow.
Winter break at school came and went. I know it’s a very busy time for everyone as Spring approaches. It’s hard to see life outside passing me by while I wait for Spring so I can at least get fresh air here at home. It has continued to be cold and wintery over the past few weeks. If you’re able to be outside today doing anything: errands, standing at the bus stop, or waiting the train platform on your way to work: think for a moment what it would feel like not to do any of that for three months. It’s a very long time. Mundane things can be sweet when viewed in a different light.
I am so grateful for the offers of help and meals that continue to come. Let me assure you they are so needed and appreciated. I will have chemo again this week. In two weeks’ time the plan is to do scans to see if there is any visible evidence about whether radiation and chemo have shrunk the cancer.
My daily reminder: Find a bit of beauty in the world today. Share it. If you can’t find it, create it. Some days this may be hard to do. Persevere.
In case you need a bit of beauty I will leave you with one of mine, a good laugh this week from Tristan. With a very serious expression on his face he says to me quietly from the dinner table, “Mom, I have something to tell you and you’re not going to like it. It’s something I learned. I was reading it in a book. But I think you will be upset. The book was about Albert Einstein. It said that for a while he didn’t want to go to school. He didn’t want to learn things in school that they wanted him to learn. He just wanted to learn what he wanted to learn. He stayed home for a while and didn’t go to school. See? I think you would not think that was very good that Albert Einstein didn’t want to go to school.”
February 23rd, 2014 §
Sunday morning.
A different kind of strength: shave the few soft but strong hairs that are finally ready.
Now gone to the floor.
No tears.
Necessity.
……….
You’ll be seeing more posts here in the near future about some of my feelings over the last two months. I’m starting to feel more like myself. The vertigo is lessening with the decrease I’ve been able to make in the pain medication, as we’d hoped. I’ve reduced the pain meds by 20% and the hope is that as the radiation effects start to kick in I will be able to decrease more. It’s been five weeks now since I finished radiation. I needed these Fentanyl patches desperately while the tumors were out of control. I could not have done it any other way. But certainly we all want me only using the amount I need to control my current level of pain.
I will be going back to meet again with my palliative care doctors this week to reassess my pain meds and talk about the plan for the next few weeks. I was thrilled to see that my last post about the importance of early palliative care and its definition (not end-of-life pain management… but instead total patient care pain management) was so well-received by patients and doctors alike. I encourage both sides to really form a team and focus on all side effects that patients are having with all kinds of treatment.
Patients function better not only emotionally but also physically in that they will heal better if their bodies are not weakened by pain. It takes trial and error to find the right drugs and the right amounts. It takes patience. Most palliative care doctors are experts in patience, I have fortunately found. I know that is not always the case and I always receive emails and comments from people who have had distressing experiences with their care. I am so sorry for that. I am hoping by relaying my own experiences, readers who have not yet found help with pain will have strength to ask again or pursue help if they’ve been unable to.
I’ve started my second month of chemotherapy (Taxol). I do three weekly treatments in a row and then have one week off each month. I had my first infusion of my second month on Thursday. I haven’t had any additional reactions to the chemo so I’ve been able to have the sessions done rather quickly (30 minutes for the 3 pre-medications and then 60 minutes for the actual Taxol). Sometimes I go alone and sometimes I have a friend join me. I am developing a routine and it has worked well so far.
We still have a lot of snow on the ground and on sunny days like today the brightness is astounding. We are all anxious for Spring but it’s just not here yet (more snow due to arrive this week). I am thinking of my snowdrops and daffodils just waiting under the snow pack. The photo at left is from last year… can’t wait to see this in the front yard again soon.
For today I’m sporting a head scarf and getting used to seeing a new reflection looking back at me in the mirror.
………
Make the most of this day. Whatever that means to you, whatever you can do. No matter how small it seems to you. Don’t waste it.
February 7th, 2014 §
It’s hard to believe how many days went by when I was in the hospital. It’s hard to believe how many days have gone by since I’ve been home.
I have wanted to write a blogpost so often. I sat down at the computer many times in the last few weeks to update you on what has been going on.
Most often what happened when I did that is simple: I got very tired and fell asleep. Sometimes my vertigo was really distracting. Sometimes the distraction was something wonderful: one of the kids wanted to tell me something. Frequently it was Tristan in his little voice saying, “I love you, Mama.” That one always takes priority, of course.
I’m on a lot of pain medication at the moment. I have been since leaving the hospital almost three weeks ago. The positive effects of radiation haven’t quite kicked in yet. I still have many of the negative effects of radiation. These will go away soon. But right now I’m still waiting. This is totally normal for radiation that is used in the way I used it, I should point out; it takes weeks, and in fact months, for the positive benefits of radiation to be fully realized. During that time the negative side effects of radiation can linger.
They radiated my spine in the T9/T10 areas from both the front and back and also radiated my pelvis through from the left and right sides for ten sessions over two weeks. The side effects that I have are related to the particular lines of radiation and what areas the beams hit while also hitting their targets. For me, esophagus, stomach, intestines, colon, pelvis, sacrum, and spine were the main areas hit. Esophagitis which makes eating and drinking painful is starting to decrease (but the raspy voice continues). Problems with digestion continue. Lowered blood counts continue. Pain and inflammation in nerves and tumor sites continue. Heartburn and colitis have decreased. I do not have radiation burns right now and they really didn’t get too bad over the course of those two weeks, just some sensitive pinkish/brownish areas.
The pain that was so debilitating is finally under control with pain patches. It takes quite a high dose to keep it managed right now but we will try decreasing this amount as the weeks go on. I will meet with the palliative care team in a few weeks to talk through a strategy for the reduction. The team is always available by phone for any fine tuning or questions that I have until that time.
Again I’d like to remind readers that palliative care is not synonymous with end-of-life care. Palliative care is for pain management and side effect management at any point of treatment for cancer or other diseases. If you have pain or other problems that are bothering you or a loved one, I encourage you to talk to the specialists in palliative care. They will be able to help.
Patients and their families often wait too long to consult with these specialists because they think talking to them implies something about death. It does not. In fact, if you wait too long (until the very end of life) the palliative team will probably be less likely to fully help you or your loved one because they won’t know how the patient responds to different medications, what their side effects are, what doses they respond to, etc. Palliative care doctors can help better if they know the patient and their particular side effect profile. I implore you to use them sooner rather than later. Time and again, studies have shown that healing occurs better when patients are not in pain.
We aren’t quite sure where it’s coming from, but my vertigo is quite the problem right now. We know it is from one of my medications, presumably the pain one. Of course for now I still need to make my pain medication the priority. As I said earlier, as soon as I can, I’ll be decreasing that dose. We know from a scan a few weeks ago that I do not have any metastases in my brain causing the vertigo. Of course that was a natural concern and it’s nice to have that possibility off the list. I still can’t drive because of the vertigo. So I’ve been housebound for the three weeks I’ve been home. Before that I was in the hospital for almost three weeks. I don’t have cabin fever too much because of the bad weather we have been having. But I’m probably getting close.
I’m still trying to figure things out. I’m still adjusting to the new information about the tumors and the progression that’s been happening in my body over the last few months. I’m learning about the genomic mutations that are present in the metastases and what they mean for future chemotherapy and clinical trial choices. I did not start the clinical trial I was planning to, obviously. Instead, we needed to do more aggressive and surefire treatments rather than investigational. Therefore, I did the radiation and then started chemotherapy 5 days after the completion of radiation (a bit of a fast track but I felt up for it and my bloodwork and exams indicated to my oncologist that I was ready).
I started chemotherapy two and a half weeks ago. I’ve had three infusions so far of Taxol. This is an intravenous chemotherapy that works on rapidly dividing cells of all kinds. One ramification of that action is that it will make my hair, eyebrows, and lashes come out in the next few weeks. I received it in a different regimen six years ago as many people do with early stage breast cancer following the use of Adriamycin and Cytoxan on a dose-dense schedule (every 2 weeks). It’s a popular drug.
The way it’s used now in the metastatic setting is different in terms of dose and frequency of infusions. In the metastatic setting there are different doses that are used. I’m using the highest right now. It is done in a “three weeks on, one week off” schedule. That means I get it once a week for three weeks and then I get a one week break. Though I never had a bad reaction to it in 2007, I did have a reaction to the drug the first time I got it a few weeks ago. I won’t go into the details of it here. I’ll just say that with increased amounts of steroids as pre-meds I’ve done just fine with the Taxol since that first episode.
For now I’ll close by saying I’m grateful for the friends that have been lending a hand with rides and playdates and meals while I’ve been housebound and unable to drive. I’m thankful for all of my readers who have been checking in on me and waiting patiently for this update. I am so happy to see so many new blog readers and Twitter followers in the past few weeks!
I want to give special recognition to all of the doctors, nurses, aides, therapists, and everyone else I came in contact with at Sloan-Kettering while I was hospitalized. Yes, there are always ways to improve, but I can truly say that I felt fortunate to be in such a caring environment for those weeks. I never doubted that it was the right place and that everyone there had my health and overall well-being first and foremost in their minds. It was always a team effort and for those of you who helped me in every way, I thank you. The fact that I miss so many of the you who cared for me shows that you made an impression on me.
The blogposts will return to a mix of updates, practical advice, and poetry as the weeks go on and I feel more and more like myself. Most posts will be shorter than this one but I know most of you have been wondering how I am and what I’ve been up to. I think this brings you up to date.
*Please note that I do not need suggestions for my side effects. I haven’t gone into the details here of what I’m taking, but I do have what I need from my team. Thank you!
Find a bit of beauty in the world. Share it. If you can’t find it, create it. Some days this may be hard to do. Persevere.
January 10th, 2014 §
The car has always been a place of refuge for me.
The shower, too.
Water to rejuvenate
Clearing away the old,
Ready for a new day ahead.
The moment of awakening is significant.
I have learned quickly what the next few hours will be.
I try to give a nurse a complete report but I encounter one problem immediately.
I really cannot type accurately.
My body shakes, my hips cry out in bony futile gasps. I gather up my pump cords, release myself from the wall’s grip.
I walk, counter-clockwise around the nurse’s station with a vengeance, trying to push the pain and discomfort away.
……………………………………..
I am Angry at this morning and that which has me here.
The tears arrive.
The radiation pain seems to be on the way in.
How long with it last? Does that mean it’s working? I and everyone else ask.
“I don’t know” is the way to do it. I say it aloud to the dark, embarrassed after the first word that I realize I am alone in the room.
I hear my voice, speaking to someone not present.
I can’t help but cry as I push the pole.
The movement makes it better. It reminds me of being carefree on a summer day, wind in my hair from the sunroof, feeling the sun on my face.
I think of my friends readying their homes for the day before work and school.
I can feel the radiation, where it burns, or at least the spots where tumors are trying to escape their home,
where they try to find new lands to conquer in a cat and mouse inside my body.
It doesn’t matter what stinking metaphor you use for it; in this case, all roads lead to Hell.
I contemplate eyeliner while the nurse stands, patiently waiting to see how I’ve done overnight.
…. But there is no one there.
I focus very hard on the tasks at hand: morning medicine most especially.
I start to tell my nurse that I weighed myself already today. Or yesterday. Or two days ago. But I can’t remember now. And so I remain mum.
In each moment my mind leaves. I don’t know where it goes. But in those gaps which feel like seconds, minutes have gone by.
The tea is divine, hot silky relief from the cold my body cannot push out.
I realize whatever it is I thought I could accomplish at the keyboard won’t happen once again.
I can’t concentrate. I find gibberish on the page. It takes hours to do a few moment’s work.
Extra time lost.
Time lost.
My precious time.
I stay committed to sitting up, bedside, fighting the urge to recline.
I listen to music trying to keep myself alert.
I think about my children, wondering what each is doing…
I realize today I am too foggy from medication.
I won’t be able to do much for a while. I am too busy talking to people that are not there.
I will rest, let the pain calm, let my head settle.
January 6th, 2014 §
The last weeks have not gone as planned.
I had the liver biopsy and PleurX drain put in my left lung on 12/31/2013. I was going to only stay one night for observation and to try to address the pain that I was having. Further tests revealed more information. The pain that we thought was coming from my lung and spine wasn’t just coming from my lung and spine. In fact I have some tumors in my bones in the left hemisacrum and right femur too. The spine tumors are now in more vertebrae than we’d thought.
I’ve actually been in the hospital for 6 days now trying to get the pain under control and formulating a treatment plan with my team. I will need to be here for a while longer. I am starting 10 sessions of radiation later tonight after being mapped this morning. We had hoped to do it in five sessions but for reasons I can’t go into now they have decided this is a better route and will be more effective for the future.
This treatment will stop the current progression of pain, but the way this radiation works for me is that it won’t provide true pain resolution for probably about 2 weeks and then improve further over the next few months. The pain reduction will be cumulative and take a while (long after the radiation is actually over) to see final resolution in my case. I’ll have to deal with this for a while yet.
The side effects because of where they are targeting the beams in my spine will be irritated esophagus, trouble swallowing, nausea, vomiting, and heartburn. The other radiation site in my hips will potentially cause decreased blood counts, pain, irritation, gastrointestinal pain and dysfunction and the like.
My pain is still not under control and I’m on a Fentanyl pump system that allows me to dispense medication as needed in accordance with the pain levels. I will convert over to oral medication and patches when it’s time for me to go home once we can figure out my needs. The pain and palliative care team here is unbelievably caring and devoted. So are the physicians and nurses. I have created an expanded family here already and can’t say enough nice things about the quality of care and total commitment to the patient.
I think for now that’s enough news.
Please, please respect my declaration that I do not want uninvited visitors, any gifts, or any flowers sent during this time. I know the intent might be good, but I appreciate so much those who have opted to instead donate to my Sloan Kettering metastatic research fund instead of purchasing anything for me. I haven’t been able to send thank you emails for those recent donations but trust me, they are appreciated. Good thoughts are also always just fine and have the right price tag!
This is a time when I am dealing with severe pain, a medical diagnosis that is unfolding and serious, and needing rest as much as possible. I do read emails but I am not responding to most at this time.
I was not able to start the clinical trial because of these newest announcements. We will see if I am eligible for it again in the future but for now we have to get the disease and pain under control. I did go on chemo for a few days but it now needs to be stopped during radiation. I will resume chemo after radiation is over and about a week of recovery time has elapsed.
Things change hour by hour, day by day. I’m adjusting the best I can. I hope this will at least let you know where we are, a long way from where I thought I’d be in the first days of this new year. Welcome to the world of metastatic breast cancer.
Once again, it’s been a while since I’ve updated. Somehow most of you know that with me usually no news does not actually equal good news. Before I give an update I want to remind readers that I do update the blog Facebook page (click here to reach it) with short medical updates more often these days if you are interested.
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