Journal entry by Angela Knapp-Levesque —
Hello friends,
I say friends to all of you, because even if we have not met you would not be reading this if you did not also love/ care about Lakshmi. This is Angela, co owner of this Caring Bridge Page. Lakshmi has given me and my family so much of her heart over the decades that we have know each other that setting up this page while she fights Breast Cancer felt like the absolute least that I could do. It has been easy really. She emails me and for the most part I just cut and paste because no one can convey her journey better that she can. I open myself to listen and share. Two weeks we were talking, as we often do. I wondered, as I ALWAYS do how she has the energy to do all she has to do to battle this disease. For the first time I heard her falter. She is TIRED. It is not just the ongoing chemo. It is not just her body fighting side effects and healing from the invasive treatments of the past year. It is not just the labor of love of parenting while so very sick. Her family (especially her mom) and friends have been absolute anchors through all of that. It is, at the moment, all the hoops she has had to jump through just get the treatment that she needs to just survive. I want to have positive energy only for her through this journey, but I am not going to lie, sometimes it is hard. Right now I am fighting the anger. I am angry at Cancer for hurting the sister of my heart. I am angry at a medical system that drains every last cent from people fighting to live, fighting to raise their children. I am sad that every day is a battle for this beautiful soul who has blessed us all with her love. She is tired. She felt too tired to write an update and yet she needs our help. She is sad that she has to ask for it. I am angry that we have system that puts her in a position to have to. She asked if I would write an update. I asked her simply for the bullet points that she wanted shared. What does my hero do... she writes the bullet points with enough information and details that once again there is no way I could say it any better. She never gives just a little. She never does half work. Here are her bullet points:
Finally...got the energy up to get this list to you:
- Learned recently, due to an insurance company needing a re-authorization to continue my Chemo Pill prescription, how hard on my body it is to go off this medication and then have to go back onto it and re-adjust. It made me VERY sick for quite a while.
- I am still expecting to have to pay full price for it in October ($13,000 total) and SHOULD be able to beg the pharmaceutical company to cover part or all of November's cost (another $13,000) but they dont let you do that until you can PROVE that the insurance isn't covering it, showing them a large bill :(.
- I am concerned about missing the medication for a few reasons; 1. It makes me susceptible to the cancer returning 2.I get very sick going on and off it (blood work reflects the level of sickness), which could lead to ER visits and hospitalizations
- I will soon be scheduling my final operation for sometime in the beginning of September, which luckily will be mostly covered by insurance, and need to sort out how I will ensure I can continue the Chemo Pill before I am out of commission during surgery and recovery.
- Financially I am stretched very thin, with monthly health costs still around ~$650-$1,000. I had to start seeing a specialty dentist due to the way dose dense chemo affected my jaw and teeth :(
- Also, my insurance company stopped paying for supportive acupuncture appointments that keep my Chemo Pill toxicity down, which I have been trying to make happen every once, but it is not enough.
- I still feel like I am hanging by a thread of hope that maybe I will make it through this year without a recurrence or hospitalization.
- I am humbled and grateful for any support I receive, as I know that many are suffering right now
This is what she can convey while tired. She is a power house of a person. There are so many details in how she came to the numbers and the process. We have accessed services and found her a case manager with her insurance company but in the end the limits are the limits. She is applying to many foundations etc. but as she is continuing to work to maintain insurance, provide for her family and keep the normalcy of her career she does not economically qualify for many unless she shows that she is drowning in medical debt. We will keep trying. Anything anyone can contribute to the gofundme account on this page will help more than you can know. If anyone has other resources they wish to offer please feel free to email me at amk1824@hotmail.com with Lakshmi in the subject line so I know not to skim past it when I do not recognize the email. I would like to gather all the support and resources so as to not overwhelm her further and set up times to review them with her. As always your words of love and support are forever welcome. She is tired... and she is a warrior.
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