How much hope?

So I know it's been a couple months since I last posted. And I know my last post was a real drag. I'm sorry about that. A lot of people told me it made them cry. It made me cry too. In general however - my feelings about it all haven't really changed from that last post unfortunately. I still feel like I'm dying. But what has changed is I've been there and back to the National Institute of Health (NIH) in  Maryland, and I'm scheduled to go back again on 6/12 for surgery. So that's new.

There's seriously a lot going on in our life right now ... like A LOT. Like holy shit - are you serious - I need to call TLC and sell our story to them kinda A LOT. You can't make this stuff up because if you did no one would believe it to be plausible. So let's sidebar for a second to allow me to rant a little bit.

ahem.

I can't remember if I've used this metaphor in the blog - but if I have then you'll remember and forgive me for the repetition - and if not then it's new! Yay. Ok so sometimes ... when I'm trying to visualize a way to describe what it's like going through all of this ... the image that comes to mind is me on a cliff. A huge pane of glass separates me from all those I love and it extends in all directions so I can't walk around it or go over or under it. On the other side of the glass is my family and friends ... my children. For the most part ... the big glass pane stays where it is. But every now (about every 6-12 weeks) it threatens to move. And if it moves ... it pushes me closer and closer to the edge of the cliff. It takes away the amount of ground I have to stand on ... and it doesn't give it back. Once it gains ground, it keeps it. And my family and friends stand on the other side of the glass watching helplessly as the amount of ground I have to stand on slowly disappears.

Sometimes the glass pane doesn't move for a while .. a couple months. The first time it appeared it didn't move for a whole year. And we all relaxed a tiny bit and lived our lives as normally as we can ... Sometimes I can get comfortable on my little piece of ground and I think it's OK ... I think it's enough ... I can be happy with this little bit. I gain a bit of confidence ... falsely.

Because then the glass moves.

And what I want people to understand through this metaphor is that I'm not the only one suffering in this situation. Yes - I'm the one being pushed closer and closer to the edge of the cliff. But the people on the other side of the glass ... my husband, my kids, my family ... they are suffering just as much. They are watching this horrible thing happen. They can't turn away because of their love for me ... and they can't do anything to stop the glass from moving ... from existing. They can't switch places with me, they can't endure for me ... they can only keep me company ... and watch.

Can you imagine that weight? Can you imagine what that kind of uncertainty would do to someone's mental health? Watching someone you love so much be pushed toward their death and you unable to intervene in any way. The unrelenting stress and intensity of anticipation that those who love me carry on their shoulders each day is unlike anything else. The rise and fall of hope and despair, hope and despair ... sometimes just despair after despair after despair ... It's like watching someone you love be tortured. And you can't do a damn thing about it but watch and tell them it's going to be OK.

On top of this ... we also have to live our "normal" lives that need living - that require living. Earning income ... grocery shopping ... get oil changes on our vehicles, mowing the grass, walking the dogs, picking up the poop, paying the mortgage, making dinner, exercising, dealing with insurance companies, scheduling doctor appointments - cancer and non-cancer related appointments ... and oh yes ... be parents to two young children who tantrum and need stimulating engagement so they continue to grow and develop into intelligent, kind and decent human beings. Lunches need to be packed, diapers and potty training and bedtime stories and shadow puppet shows and making sure the tooth fairy shows up ... and pre-school graduation.

Any single facet of this oh so crazy complicated life is enough to break even the strongest person down. Combine them all together and seriously?! WTF. But it happened. The combination has caused a mental break. So now the layer of mental health treatment and management has been added to the list of shit that needs to be handled.

And then we really say W.T.F.!!!

I can't tell you how many times I've looked up into the sky and pleaded for a reprieve.

End rant.

And so - in a way ... this brings us back around to what the hell is going on. And that is - cancer hits the WHOLE family ... HARD. It's never just the patient that's tortured. It's the whole damn family.

Since my scans in March where it showed "mixed" response - some tumors responding, some not, some new ones appearing ... I was granted one more month of waiting. I told my doc I wanted to see what happened. She said OK. We can drag our feet a little before starting the next treatment. So I got one more of the same treatment in April, and we scanned again shortly thereafter. I hoped a tiny bit that things would show something different this time - but I knew deep down that the likelihood of that happening was slim. And that deep down part was right. It just showed more of the same of what we saw in March. Minor changes all around, in all directions.

During this time, I also reached out to a clinical trial team. The trial itself is run by Dr. Steven Rosenberg. He's evidently a big deal. I didn't know this when I started. But he's kinda the guy who's been leading the charge in the field of immunotherapy and using people's immune systems to attack their cancers. I emailed them not expecting a response as quickly as I received one and after reviewing all my scans and reports, they wanted me at NIH in Maryland for screening. It was that fast.

Come here often?
"We need to run some labs"
I went out to NIH for screening and in 2.5 days they did a whole bunch of bloodwork (like 12 tubes of blood), a chest x-ray, a CT scan, a brain MRI, and pulmonary function tests. I met with the trial team, the attending doc on the trial, as well as the thoracic surgery team to discuss how they were going to remove the tumor, a wedge section of my lung and part of the lining of my chest wall. And then I flew home.

Talk about a whirlwind of information. I don't think I even started to process the information until I got home - which manifested as not being able to sleep the first two nights home and an intense pain in my back and chest and led to me breaking down in the bread isle at the grocery store with Mike and the boys because I was just that exhausted on all levels.

The trial itself - for me - will be a chance, at a chance. They won't even know if there will be anything to work with until after they get the tumor and my T cells together in a petri dish. They're going to take a tumor from the lower portion of my right lung (which ultimately means they have to do a wedge resection of my lower right lung because they can't just remove the tumor itself ... that wouldn't be very neat for stitching together), and they're going to harvest my T cells, through a procedure called apheresis. (I could go into all the craziness around both of these procedures individually, but I'll spare you as this post is already long.) Once they have that - they're going to slice, dice and sequence the tumor for any mutations, and then set the T cells on attack - to see if any of the T cells can recognize and "react" to the mutations. If there is any reactivity between the two, then we'll move into the next phase of the trial which is growing those reactive T cells into a small army. If there is no reactivity - then that's it - nothing more to do.

In the meantime - I come home after surgery and heal up a bit more - and then continue on business as usual. I will likely start chemo in an effort to get the tumor burden in my liver down. Depending on whether or not this particular chemo drug works - will determine if the glass moves.

If I'm so lucky as to have a small T cell army grown for me, then at a point in time when it is right - meaning my "business as usual" treatment at home is not working, then I'll go back out to NIH for the treatment phase of the trial. Simply put - they'll wipe out my current immune system with chemo and infuse the new T cell army immune system into me - pump me full of other meds to make sure the T cells remember they're in my body and not in a petri dish - and then watch what happens. The goal is for those T cells to begin attacking the other tumors in my body. This is what they're calling a "living treatment." It's using your own cells to fight your cancer, which was born of your own cells as well. This could do nothing ... it could do something, but that something not last for very long ... it could clear out all the cancer ... it could kill me ... or it could do a combination of all of this in some fashion. Thus far, for metastatic breast cancer, they have 1 patient who has been 18 months cancer-free as a result of this process. One.

So hopefully you understand why I say a chance ... at a chance. I won't even know if any of the advanced phases of the trial are available to me until they get the cells under the microscope. All of which takes a couple months of testing, and a small sacrifice from my lung.

So for now, I've been off treatment since mid-April, as a requirement of participating in the trial. I will continue to be off treatment until probably the end of June. I'll pick up chemo mid-summer, and hope for the best. That's all we can do at this point. I'm of course looking at other trials and other meds and anything else that I can as a feasible treatment. I'm still working full-time and being mommy and wife and daughter and sister and friend. I'm still riding horses as therapy. We're still trying to give our boys as normal a life as possible - as much as possible. We're swimming the hot summer days away (and dealing with our first bout of swimmer's ear) and cheering at the boys' end of year school program ... and I'm grinning like an idiot with pride while simultaneously wiping tears away while I ponder if this will be the only graduation ceremony I will ever see.

 

 


I don't know how much hope to have in this trial, or in this new chemo regiment. But I have some.

"Hope is the thing with feathers,
That perches in the soul.
And sings the tune without the words,
And never stops at all."

--Emily Dickinson


UPDATE 6/4/2018:

This is an article about the exact trial that I'm involved with. This is the ONE patient that I mention that has found success with the treatment.

https://www.npr.org/sections/health-shots/2018/06/04/615673436/therapy-made-from-patients-immune-system-shows-promise-for-advanced-breast-cancer











Comments

  1. http://sciencealert.us2.list-manage2.com/subscribe?u=3996984deafc554c16e8bdad6&id=fe5632fb09 Here’s another article about your treatment. Praying for your cure.

    ReplyDelete
    Replies
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  2. Wonderful Thanks a Lot. Keep Up the Good Work
    Paptia

    ReplyDelete
  3. You’ve been in my prayers. I think of everything you are going thru and pray for your family and doctors, as well. I know the new trial is going to work.

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  19. I Appreciate the great Dr Osasu for his healing herbal medicine he prepared for me, after being a sufferer of H.S.V 1&2 Disease for 2 years. it was very surprising how i got cured from Dr Osasu herbal medicine, that quickly cleanse my whole body and today after checking myself in the hospital i was found negatives, dear viewers my doctor personally told me that there was no cure for my Disease at first i thought the world has ended for me but as soon as i got reached to Dr Osasu herbal medicine, my story was not the same again, i only used Dr Osasu herbal medicine for just 3 weeks and i was totally cured, no one deserve to suffer for so long,health is wealth my dear viewers no amount of money can cure you except you get the right remedy and be cured completely, today a cure is found and confirm by many others like me, Dr Osasu also has other cure for HIV AIDS, DIABETES,HEPATITIS B,CANCER,HEART DISEASE,MIGRAINES,COLD SORES,I am going to keep spreading this good news to the whole world, his email address is (drosasu25@gmail.com) or his WhatsApp him on this Tell.Number +2347064365391

    ReplyDelete
  20. I am 29 years old and have been diagnosed with breast cancer, ease of treatment and a similar story, except for my first acceptance as a rejection of herbal medicine. I was not part of the Perseid movement and did not really build relationships with any of them, I just believed in their operation. I say this because it was during the use of Dr. Itua herbal medicine that I now attest that herbal medicine is real, the phytotherapy Dr. Itua heal my breast cancer which I suffered for 2 years. Dr. Itua herbal medicine is made of natural herbs, with no side effects, and easy to drink. If you have the same breast cancer or any type of human illness, including HIV / AIDS, herpes cancer, bladder cancer, bladder cancer, prostate cancer, kidney cancer, lung cancer, skin cancer, skin cancer and skin cancer.testicular Cancer, , LEUKEMIA, VIRUSES, HEPATITIS, INFERTILITY WOMEN / MAN, LOT OF LOVE, LOTTERY. ITS CONTACT EMAIL / WHATSAPP: info@drituaherbalcenter.com Or drituaherbalcenter@gmail.com/ +2348149277967

    ReplyDelete
  21. My name is Amelia, I want to use this medium to thank Dr. Iyabiye, for saving me from CHRONIC HEPATITIS B.  I surffered this ailment for 3 years, then this fateful day browsing through the internet to see if I could get help, I saw his contact and testimonies of others he has cured. I contacted him for help, and afterwards he administered his medication on me, I was confirmed cured and hepatitis free at the hospital after the treatment. You too can be cured like me if interested, reach him through his contacts: (+2348072229413 or +2348158577300) email: (iyabiyehealinghome@gmail.com)

    ReplyDelete
  22. I have been suffering from (HERPES) disease for the last four years and had constant pain, especially in my knees. During the first year, I had faith in God that I would be healed someday.This disease started to circulate all over my body and I have been taking treatment from my doctor, a few weeks ago I came on search on the internet if I could get any information concerning the prevention of this disease, on my search I saw a testimony of someone who has been healed from (Hepatitis B and Cancer) by this Man Dr. Silver and she also gave the email address of this man and advise we should contact him for any sickness that he would be of help, so I wrote to Dr. Silver telling him about my (HERPES Virus) he told me not to worry that I was going to be cured!! hmm i never believed it,, well after all the procedures and remedy given to me by this man few weeks later I started experiencing changes all over me as the Dr. assured me that I have cured, after some time i went to my doctor to confirmed if I have been finally healed behold it was TRUE, So friends my advice is if you have such sickness or any other at all you can email Dr. Silver (drsilverhealingtemple@gmail.com) sir I am indeed grateful for the help I will forever recommend you to my friends!!! with your lovely Email Address ( drsilverhealingtemple@gmail.com

    ReplyDelete
  23. HOW DR. UNEME brought back my ex lover unemespellben@gmail.com
    Am DONNA, am from UK. After been in a relationship with my Boyfriend for 1 year now and we were planning to get married soon and all of a sudden he left me for another girl. of a truth, I really love this guy and never can I imagine life without him. I further tried all my best to get him back but all my effort to get him back in my life did not work out. It was on this faithful day, I came across some Testimonies on a website about this great spell caster called (Dr. UNEME) any persons claimed that he help them to renew their relationship and bring their ex lover back, I had to contact him because he was my last hope. I contacted him through his email and he assured me that in three days time my boyfriend is going to leave the other girl and come back to me and it was a very great surprise to see my boyfriend coming back to me after three days the spell was done. I am so very happy today that he came back to me and i achieved this with the help of Dr UNEME I equally want to use this opportunity to Tell/Advice to as many who need their ex back, if you need his help you can Contact him through
    EMAIL: unemespellben@gmail.com WHATSAPP HIM @ +2348143813120


    Thank You Once Again Dr.UNEME

    ReplyDelete
  24. Hello I'm From Memphis Tennessee, USA I feel so joyful today because of the help Dr  Sunny has rendered to me for  getting my Husband back with his spell. I have been married for 4 years and it has been so terrible because my husband was cheating on me and was seeking for a divorce. But when i came across Dr Sunny Email, on the internet posted by a lady, i decided to get in touch with him and i explained my situation to him and then seek his help but to my greatest surprise he told me that he will help me with my case for there is no problem without a solution. Here i am celebrating because my Husband is back home and am really enjoying my marriage, what a great celebration. i will keep on testifying on the internet because Dr Sunny is truly a real spell caster. Why not contact Dr Sunny now if you are facing any challenges in your relationship life. Email solutioncentre911@gmail.com Also specialize i 1) love Spell2) Pregnancy  Spell
    3) Divorce Spell
    4)  Marriage Spell
    5) Healing Spell
    6) Spell for Break
    7) Money Spell
    8.) You want to be promoted in your office
    9) you want to satisfy your lover
    contact this great man if you have a problem for a lasting solution Through Email: solutioncentre911@gmail.com  

    ReplyDelete
  25. HOW DR. UNEME brought back my ex lover unemespellben@gmail.com
    Am DONNA, am from UK. After been in a relationship with my Boyfriend for 1 year now and we were planning to get married soon and all of a sudden he left me for another girl. of a truth, I really love this guy and never can I imagine life without him. I further tried all my best to get him back but all my effort to get him back in my life did not work out. It was on this faithful day, I came across some Testimonies on a website about this great spell caster called (Dr. UNEME) any persons claimed that he help them to renew their relationship and bring their ex lover back, I had to contact him because he was my last hope. I contacted him through his email and he assured me that in three days time my boyfriend is going to leave the other girl and come back to me and it was a very great surprise to see my boyfriend coming back to me after three days the spell was done. I am so very happy today that he came back to me and i achieved this with the help of Dr UNEME I equally want to use this opportunity to Tell/Advice to as many who need their ex back, if you need his help you can Contact him through
    EMAIL: unemespellben@gmail.com WHATSAPP HIM @ +2348143813120


    Thank You Once Again Dr.UNEME

    ReplyDelete
  26. I am excited to share this testimony, I was 3 years ago diagnosed of fibroid and complicated Endometriosis. My medical condition was heart broken because it was causing my menstrual cramps,bloating before menstrual periods,lower abdominal pressure which result to heavy periods. I was subjected to different medications by my doctor for treatment . Despite my visit to several doctors my health wasn't getting better, all they could say was surgery. At the verge of giving up, I went to the internet to search for a treatment at least. But I found a cure instead. In the internet, I read a testimony of a lady who had Fibroid. She shared an e-mail address of the Doctor. Luckily everything seemed to be okay after I took the Herbal Medicine. I wish I could say that’s the end of it because I haven't had any symptoms since then. 
    Do not expose yourself to more danger, use a herbal remedy that is safe and effective. If interested contact him via email address droriane6@gmail.com. or call +2349031652461

    ReplyDelete
  27. HOW DR. UNEME brought back my ex lover unemespellben@gmail.com
    Am DONNA, am from UK. After been in a relationship with my Boyfriend for 1 year now and we were planning to get married soon and all of a sudden he left me for another girl. of a truth, I really love this guy and never can I imagine life without him. I further tried all my best to get him back but all my effort to get him back in my life did not work out. It was on this faithful day, I came across some Testimonies on a website about this great spell caster called (Dr. UNEME) any persons claimed that he help them to renew their relationship and bring their ex lover back, I had to contact him because he was my last hope. I contacted him through his email and he assured me that in three days time my boyfriend is going to leave the other girl and come back to me and it was a very great surprise to see my boyfriend coming back to me after three days the spell was done. I am so very happy today that he came back to me and i achieved this with the help of Dr UNEME I equally want to use this opportunity to Tell/Advice to as many who need their ex back, if you need his help you can Contact him through
    EMAIL: unemespellben@gmail.com WHATSAPP HIM @ +2348143813120


    Thank You Once Again Dr.UNEME

    ReplyDelete
  28. HOW I GOT MY EX HUSBAND BACK WITH THE HELP OF REAL AND EFFECTIVE SPELL FROM DRmaam My name is munilah, I never thought I will smile again, My husband left me with two kids for one year, All effort to bring him back failed I thought I'm not going to see him again not until I met a lady called Jesse who told me about a spell caster called Drmaam , She gave me his email address and mobile number and I contacted him and he assured me that within 48hours my husband will come back to me, In less than 48hours my husband came back started begging for forgiveness saying it is the devils work, so I'm still surprise till now about this miracle,i couldn't conceive but as soon as the spell was cast,i became pregnant and gave birth to my third child,if you need any assistance from her you can contact her via:email: maamtifah@gmail.com Or WhatsApp or call her now:
    +27605775963 . maam also cures: 1. HIV / AIDS 2. HERPES 1/2 3. CANCER 4. ALS (Lou Gehrig’s disease) 5

    ReplyDelete
  29. HELLO
    the viewer is here to share my testimonial on how I finally joined the Illuminati hood and became RICH, FAMOUS AND POWERFUL, I did my best to become a member of the hood but I was ripped off several times , before finally coming across a testimony on the net so I contacted the agent, I was so afraid that he would ask me a lot of money before I could join the hood but to my surprise he only asked to buy the items I made and today I am so happy to tell the world who is wealthy and has been able to build many businesses with it all, I have the sum of 20 million dollars on my personal account and i am also known worldwide with the affairs which have been entrusted to me by the Illuminati and which also have the power to do what i want ... I know a lot of people can be on my way and seek help here is their
    official email: illuminatibrotherhood5555@gmail.com
    ICQ 757580619
    www.gaia.com/article/what-is-the-illuminati
    Beware of scammers, and you must be above the age of 18.

    ReplyDelete
  30. I am out today to let the world know about this great man from Africa he is a good man and his spell work 💯 % according to your heart desire contacts him today and get your problem Solved because when I contacted him I thought it won't work but at last am with my husband today and with my kids all thanks to Dr Okosun you are indeed a great man God bless you' you can contact him via what's app +2348133974847 or
    Okosunspelltemple33@gmail.com

    ReplyDelete
  31. I was diagnosed as HEPATITIS B carrier in 2013 with fibrosis of the
    liver already present. I started on antiviral medications which
    reduced the viral load initially. After a couple of years the virus
    became resistant. I started on HEPATITIS B Herbal treatment from
    ULTIMATE LIFE CLINIC (www.ultimatelifeclinic.com) in March, 2020. Their
    treatment totally reversed the virus. I did another blood test after
    the 6 months long treatment and tested negative to the virus. Amazing
    treatment! This treatment is a breakthrough for all HBV carriers.

    ReplyDelete

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