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.
…………………………………………………..
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.
Link to Twitter
I always thought radiation smelled like a mild burnt chemical. Like I think a really caustic acid would smell.
I am very sorry about your friend Ann. I am glad that you two were able to support each other.
May strength be with you and your family. ❤️
I’m so very sorry about the loss of Ann Gregory. Like you, she is (I refuse to say “was”) a clear, bright light.
I’m really sorry to hear about Ann, that must be really tough to cope with along with everything else. Thank you for keeping us all updated, I’ve been following your posts for some time now and am always amazed that you find the strength to write and let everyone know what’s going, even when you’ve clearly had a really rough time of it. Best wishes and much love to you and your family xxx
Hi Lisa
As always, after reading your latest post, I sooo want to write and say beautiful, uplifting words to you, but, hardly ever end up posting at all, Because I just can’t find the right words, I’m always filled with sadness, that you are going through this, but on the other hand, totally amazed at your strength and resilience.. What crappy timing that the effects of all this treatment might kick in around Christmas, I hope and pray that you have lots of moments of clarity and happiness with your family… Sorry to hear you lost your dear supportive friend Ann, I know she will be looking down and silently supporting you still…. God bless you Lisa xx cyber hugs from Oz
Lisa – I’m so very sorry for the loss of Ann. I was honored to have “met” her on twitter. Imagine how humbled I was when she & Chris each “followed” me. You both continue to provide strength, education, hope for so many. Again, thank you for sharing such intimate details of your personal life.
All the best!
Lisa,
Can I do anything, like cook or Christmas shopping for you? You are never, ever far from my thoughts, so I thought I would reach out and see what I could do for you and the family. Please – just ask – if it is within my power, it will be done!
Kris
Following your posts with interest and sadness. I admire your strength and composure and wish that you did not have to go through the next few weeks of treatment. Very sorry about the loss of your friend when her support would have been so valuable. I hope you and your friends/family find many moments of peace and love over the holidays. Mary.
Lisa, I know nobody can replace your friend. I don’t know how you feel about prayer and all that. My own cancer experience has brought me around to the feeling that the next chapter is going to be fascinating. I hope Ann is learning the truth of that right now. What can I say that could offer you strength today? Nothing. But please know that you are HEARD. If that counts as not being alone, then you are far from alone.
It’s so good of you to provide such a thorough update and to write about Ann. I hope memories of her will comfort you during these demanding weeks ahead.
I know you are powering through this in your inimitable way.
With love,
Jody
Lisa, bless your heart. I can’t imagine going through all of this, but appreciate the thoroughness as well. Too, love the picture of lantana on this gloomy December day.
Marcy
You are really amazing, if people don’t tell you that enough, I hope hearing it one more time helps you know just how amazing you are.
Lisa, I am so sorry for your loss. I wish that you get through this radiation treatment with as little side effects as possible. I hope when the dust settles, the cancer is knocked back a bit and you have energy to do the things that make you happy. I just read a bunch of information on organic coffee enemas. They clean your liver and other organs of toxins and people use it in conjuction with chemo especially to rid their body of as much toxins as possible. Actually, it states that healthy people should do it regularly, so naturally with a build up of toxins from ongoing chemo, one should do this several times per day. Keeping you in my prayers and wishing you much strength. xoxo
Hi Lisa,
That you have the energy and spirit to even write a blog update with the heavy duty and intense treatment you are receiving is inspiration enough to me. That you are going through so much and still even appreciating the world around you is even more amazing. I just want to say, very simply, I admire you! One reason I found your blog is my sister right now is Stage IV, receiving abraxane after previously having xeloda, and has BC mets to eyes, bones, liver, and lymph nodes; her initial dx was 20+ years ago. Of course I admire her as well. Just want to send strength and my best virtual support to you.
SRA
As always your clarity and your ability to share the details of your experience astonish me. And I wish you didn’t have to write any of it. Grateful to hear more at the same time. And thinking of you every single day. <3
xoxo
Hugs and positive energy from Maryland headed your way.
Oh man, Lisa. That’s an awful lot on the plate. I’m so very sorry to hear about Ann. Tough blow anytime; more so now.
I do hope this therapy has maximum aid and minimal side-effect. A lot to go through. I’ll be thinking of you with, as always, enormous affection, respect, and many good wishes.
Yours,
David
Prayers for you during this time. God bless you!
Deeply sorry for the loss of your friend, Ann.
That you are able to even write the logistics in a sensical manner is astounding to me, given how tired you must be.
Press on, Lisa, press on.
Love you so much, Lisa.
Thank you for the update. My condolences for your loss of a wonderful friend.
Sending love.
(I agree that there seemed to a be smell during radiation treatments. It was faint, but it smelled hot — maybe the closest thing I can think of to describe it is a hint of ash.) Hoping the treatments do all the good things for you.
I’m sorry for the loss of your dear friend. Thinking of you as you go through your treatments!
Thank you for the update. I’m very sorry for the loss of your dear friend. I hope you find comfort in her memory. Best of luck on the next few weeks of treatment. Your story reminds me of my best friend who’s been dealing with this awful Breast Cancer for the past 3 years. She’s 31 with 3 young children and I searched for so long to find a blog or article to help me understand how to be supportive and as understanding as possible. That’s how I found you. Thank you for sharing. I have already learned so much from reading earlier posts. Take care.
Lisa, I cannot imagine how difficult it must be to handle these changes without Ann to shore you up. It’s just so unfair. Thinking about you, knowing you are a mom to your wonderful children and a source of strength to them, I don’t really understand how you can possibly be helping so many others going through life traumas. But you do. You are such a source of light and strength to so many — I hope you feel our love and strength in return.
I don’t believe in a big head in the sky, but if there is some sort of cosmic balance of good and evil in the world, I hope for you all the love you share comes back tenfold and provides some strength and courage so you can rest until you are feeling better. I want that for you with all my heart.
Hello Lisa and thank you for updating everyone with your current treatment protocol First, I am so very sorry for the loss of your beloved Ann. Her memory will be forever with you and the others who loved her dearly. I so admire your strength as well…you continue to endure medical issues and treatments that would be near impossible for so many of us and your sense of purpose, committed attitude ,competence and understanding throughout is wonderful and inspiring as well as educational. I am not angry but when there are people dealing with huge issues it makes me wonder about
about those who get bogged down with the little things, but now I have no patience with that thinking at all….how can we worry about how our baked cookies or breads will turn out, how can we worry about a few grey hairs or less than perfect housekeeping or if we have the right clothes to wear to the holiday parties…..you have put the perspective in life that we all need……thank you and I hope you will experience and savor many many more of life’s real moments.
Lisa, I am so very sorry that you have suffered such a devastating loss with the death of your dear friend , Ann. She must have been an extraordinary person. As are you: YOU are the bravest person I know. I wish you weren’t facing so many nasty side effects ahead. I wish you physical and mental comfort to whatever extent possible. Sending you love and gratitude.
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No doubt. I now carry an epipen around to immediately kill one when I feel it coming on. Now pretty much none of my headaches fully manifest.I only made a passing comment about your implication that capsaicin could cause harm. While such a belief is widely held, the effects on the digestive tract by any amount cannot be considered harmful, just extremely irritable.
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I’m so sorry to hear of the loss of your friend. You will be in my thoughts this month, and I’ll be sending love and good thoughts.
Hi Lisa
My very best wishes go out to you at this trying time of your cancer treatment.
Even more so at the loss of your friend Ann. I have felt that hole you talk of …
it does get filled …. with the love and companionship you had for each other. I draw
from it daily, and wish you the same comfort.
I thank you for your blog. You have given me strength. I wish I could do
something for you in return. Seems sending love, appreciation and good
wishes are all I can do. I hope your senses pick up the wonderful thoughts
sent to you……. and your family, by so many people around the world.
Lisa, you are always on my heart. I know you must have a hole in your heart at the death of your friend. You were lucky to have each other. I am sure you can draw memories from those texts and conversations. I believe she will still be with you through your struggles. As far as your daily cancer challenges, again, I am sorry. Sorry that you have to spend each day this way. I know it’s not your thing, but all I know how to do, aside from sending love to you, is to pray for your peace and comfort. You are loved.
Hold on to the nugget of strength and courage that has carried you this far. You have been strong beyond all measure. Channel your best memories of your friend Ann to help you and your legions of readers that you have never met who wish you all that you need and hope for.
Hi Lisa, so very sorry at the loss of your friend Ann, thoughts and prayers are with you all. You’re a remarkable brave lady. I hope you get through these next few weeks as best you can and can have a relatively good christmas with your children and husband. Thinking of you, hugs from Ireland x
My thoughts are always with you. Wishing you peace as you contend w/ these next steps and some moments of ease and joy whenever at all possible.
I was saddened to hear of Ann’s passing from reading it on your Twitter feed a few days ago. The two of you were so close. Many thoughts to you, her family, and all of your friends.
I think it was you who said it last year maybe that cancer does not take a vacation for the holidays unfortunately. I know last winter was a rough time for you, and it looks like this December is off to a rough start as well. Thank you for finding the strength to update us as you can. I am keeping you, your husband, and your children close in my thoughts.
Wow. All I can say is, “You are amazing.” One more day, Lisa. And another. And another.
Sending you admiration, support, and a wish for all best possible treatment outcomes. Also sharing your grief over the loss of lovely Ann Gregory. xo.
That was so sweet what you said about your friend, Ann Gregory. Make sure you find a way to save her text. When I change cells I sometime loose my text. Blessings.
So sorry to hear about your friend Ann. I don’t know where you get the strength to keep us updated but I truly appreciate it. Sounds like it will be a rough few weeks. Hopefully, things will go as smoothly as possible and you will be able to enjoy the holidays with your family.
So sorry for your loss, Lisa and the loss to the world as well. Sending all loving kindness and good wishes your way.
Dear Lisa,
So sorry about the passing of your friend. When you wrote about not deleting her text messages it struck a chord with me -please please back them up. you can foward them to yourself via your email if that is easier. I have seen too many people lose their messages( I work in IT). think of this a s a delayed monday plead back at cha.
gentle hugs
Firstly, I was so sorry to hear about Ann. And I’m doubly sorry that you have lost a compadre in your journey. She was quite a wonderful soul. I also wanted to say how much I appreciate your posts and updates as you can. I think of you daily and am sending you some extra good treatment juju as you enter the radiation. Love and light to you and your family always Lisa!
Dear Lisa,
So sorry about your friend Ann. She sounded like a terrific woman, like yourself.
My thoughts are with you. My very best wishes to you and your family during this holiday season.
Barbara S.
Hi Lisa.
I’m sorry to hear of the loss of your friend Ann.
I had a similar mask for Oropharyngeal Squamous Cell Carcinoma radiation treatment. I’m not claustrophobic so for the most part I was fortunate that it didn’t bother me. I told the technician that it was uncomfortably pressing on my eyelids and he offered to work on it. The next day he had cut out the eye holes, which made it much more comfortable for me. I sense you’re not one who shies away from asking for what you need. Please tell the techs if there are specific areas of the mask that are uncomfortable and they may be able to help.
I think of you every day.
John
Hi, glad they could accommodate you but as I said in the piece they won’t make any exceptions because they feel it could compromise the exact position. It is not a problem for me now that I know what to expect, I just don’t like it! Best wishes, lisa
So sorry about your loss of Ann. Sending positive vibes and hope.
Thinking about you Lisa. Have had many many compliments on my new jclementwall poster!
Thinking about you. You are so strong. Sorry about your friend Ann. Keep swinging for the fence! Never give up.
I don’t remember a smell but I do remember feeling heat and I could not wait to get out of the mask. I was sick for an hour before one session and didn’t know how I would lie flat on my back knowing I could vomit in the dang thing. Anti nausea drugs to the rescue.
Pulling for you and sending you love from Arizona. It’s warm and sunny here today. I hope you can feel the warm sun on your face soon!
Ms. Bonchek-Adams: I am one of probably many ‘lurkers’ to your site and blog…you have a forthright and open style of communication that makes a reader believe he could be your brother! Your antibodies to the pink ribbon campaigns and Komen really shaped my thinking about breast cancer…and all cancers.
I am not an oncologist, but I have referenced your blog to internal medicine residents and students…your words evoke a shared kindness and empathy…
Ann Gregory may have had legions of friends…you have a multitude of sisters and brothers. Thank you for the update…
Hi Lisa:
As always thank you for sharing your journey with us. As much as its hard to read sometimes I really really appreciate the rawness, intensity, and the overwhelming amount of stuff you and others with cancer have to go through. I appreciate the reminders to find beauty and to carry on through the slog. I am reminded that being late for work, bills, ups and downs with family just aren’t “big” deal in the whole scheme of things. I hope with all my being the “plan” produces the desired results. Love and care to you and yours.