April 23, 2016
Hello everyone! Thanks for visiting :) The support I've received from friends and family thus far has been incredible and for that I am tremendously grateful. In an effort to keep everyone updated as easily and efficiently as possible, I decided to create this page, so please check in as often as you'd like - I will do my best to keep you all updated on my progress!
***5/4/16 My sweet sister created a page on YouCaring (https://www.youcaring.com/amanda-kelly-563876
) to help ease the burden of my ongoing medical expenses. Once again I am completely blown away by the outpouring of kindness, generosity, prayers, well-wishes, and love. I am tremendously grateful for the amazing people in my life and in this world. Donations made directly through this site (the 'tributes') go to CaringBridge for the upkeep of this wonderful platform. If a donation has been submitted to CaringBridge in error, you may request a refund by replying directly to your donation receipt, visiting their Help Center page here http://caringbridgehelp.custhelp.com/
or calling 651-789-2300***
Thursday, April 14, 2016, I received my official diagnosis: Primary Mediastinal B Cell Lymphoma. It is a rare, aggressive form of non-Hodgkin's Lymphoma, classified as 'Stage 2 Bulky' due to the large 'growth' in the space in my chest between my lungs (called the mediastinum). The CT scan from March 22 measured the growth at 13.4x7.8x8.4cm - quite large. Anything over 10cm is classified as 'bulky.' It is compressing my breathing passageways and is located near my heart, left lung, and major arteries, so the doctors want to move quickly. The recommended treatment protocol is highly effective and this is one of the most treatable, curable forms of malignancy. It has a 100% response rate, and 90% complete response rate. Yes, it is chemo, but Silver linings, it works! Given the fact that it is in my lymph system, which circulates throughout my body, surgery is not an effective option. It is only in my chest and has not spread, but chemo is apparently the only way to ensure they will get it all. Fortunately, radiation is not typically involved. Interestingly, this particular form of lymphoma (there are over 80!) primarily affects females (mostly white) in their 30s. Welp.
So, here's the backstory leading up to my diagnosis:
The Saturday night of Thanksgiving weekend (end of November 2015) I started to experience pain in my upper chest when I breathed. I had just had a massage so I thought maybe something funny happened and I somehow got a bruise on my upper sternum, because that's what the pain felt like: a bruise inside my upper chest. That Monday I got home from work and felt some minor chills but slept it off and felt fine the next morning, however again that evening I got chills and the pain was still there so I made an appointment to see my doctor the next day. My vitals were perfect and he diagnosed me with pleurisy - an inflammation of the lung lining that causes discomfort when breathing due to the membranes rubbing against one another, but nothing serious. He advised Advil and rest. I then came down with a sinus infection and returned the next week, and he prescribed antibiotics. By the holidays, I felt more or less recovered, however the slight discomfort in my chest lingered a bit and triggered a cough when I engaged in physically exerting activities, eg yoga. I had read that pleurisy can take some time to resolve itself so I chalked it up to the winter/ cold/ stress etc. At the end of February I came down with a horrible flu/ cold since everyone at work was sick, and I was up and down (mostly down) for weeks, through mid-March. My cough was awful and the pain was getting worse. By then I could only sleep on my right side due to the discomfort in my chest. I went on a second round of antibiotics and it helped, but something was still off. Then, on Monday, March 21, my Uncle Don, who had been battling cancer, passed. He had stopped treatment and we knew he wouldn't have long, but he went much sooner than any of us expected and we were shocked and utterly grief-stricken. Cancer has taken too many members of our family: 6 of the 10 members of my father's immediate family. Both of his parents, two of his younger siblings, and two of his older siblings, neither of whom made it to 70. The first to pass was actually the youngest, my Uncle Jim, who passed at the age of 30 from Hodgkin's lymphoma. Don's only son (and only child), my cousin Mike, also passed at the age of 30 from melanoma that spread to his brain.
The night I heard about my Uncle Don's passing, I woke up with extreme pain in my left shoulder. The next morning I woke up and knew I had to get checked out. I just knew something more was going on. After a little googling, I called up my doctor in somewhat of a determined panic and said 'I need a CT scan this afternoon.' The receptionist replied with more than a little skepticism and annoyance, 'Well it doesn't work like that, you'll need approval, and a reason to get one. There's no chance you'll get one this afternoon.' I insisted that I see him early that afternoon, and she booked me for a 1:30 appointment. I received a huffy sigh and minor eye roll from her when I got to the office, but my doctor sat me down and took my vitals, again deeming them 'perfectly healthy,' but given the longevity of my symptoms he decided to send me down for an X-ray to be safe... and probably somewhat just to appease me. Really though, what doctor would suspect anything serious from a healthy 30 year old? I went down, wrapped the gigantic hospital gown around me tight, and got my x-ray. As I walked out I swore a technician gave me a sideways glance, but tried not to think much of it. My doctor had said to come right back up after the scan so I did, and he sat me down and opened the file. Pause. 'Hm'. Mumble. He turned the screen to me and showed me my clear right lung, and a large portion of my left lung covered in some white film. He couldn't be sure what it was, and said, 'Well, it looks like you've earned your CT scan.' That is obviously not something I wanted to be right about, but thank goodness I listened to my intuition.
The next morning we flew to Oklahoma, and while we were getting ready to board at the airport I received a call from the hospital saying my doctor had ordered a PET scan for me to schedule the next week. Confused and scared, I hung up and immediately called my doctor, who was with another patient at that moment. I requested that he email me to explain the results of the CT. In the meantime I researched PET scans, and of everything I read one word stood out: cancer. When I landed I had an email from my doctor, explaining that the CT showed a large 'growth' in my chest between my lungs. Not in them, fortunately, but it was large. At the suggestion of my doctor friend, I requested that he send the full CT report and had her read through it the next day. There was no way to know the exact diagnosis from just the CT, so I tried to focus on the fact that it might NOT be cancer, but in the meantime I began my research. I googled what a mediastinal growth was, and the 'growth' search came back with 'tumor' which ultimately implies cancer. So I researched how to shrink tumors and get rid of cancer. I made the immediate decision to do whatever I could to start combatting this thing inside me from that point on. Time for it to go away. I scheduled my PET. I searched for organic juice places in the middle of Oklahoma (yes, I found one!). I stuck to my healthy diet and tried to up the fruit and veg intake as much as I could in the middle of chicken fried steak country. In the meantime, I tried to keep things quiet as the family was already gathered for a very difficult reason, and at that point we didn't know anything official.
When I got back from Oklahoma, I turned things up a notch. I bought a juicer and started juicing carrots because I had read that some people cured their cancer just by drinking carrot juice and doing green smoothies and upping my intake of cruciferous vegetables. I cut all sugars and processed foods and severely limited my carb intake, because I read over and over that cancer cells thrive off of glucose. I completely cut dairy because of the studies that show a link between casein, a protein found in dairy products, and tumor growth. I cut caffeine cold turkey (no withdrawel :) as well as alcohol. I've read books and articles and watched documentaries on anti-cancer diets and detoxing and herbs and supplements and energy healing and stress and immunity.
I went in for my PET on Wednesday March 30, and met with the surgeon Friday April 1. My original appointment with him was scheduled for April 12 because he was booked solid and was warned they rarely get cancellations, but the receptionist called back within an hour of my initial call to say that they had not one but two cancellations - the first being that Friday, so I booked it.... incredibly fortunate that things have opened up for me and the process has moved along extremely quickly all things considered. My parents both came to the appointment and we learned that the PET showed activity in the region of the growth, which is not a good sign. It means there are active cells - active cancer cells. The surgeon explained that we needed a biopsy before we could make any conclusive diagnoses or decisions about treatment, but he did not think this would be a job for him. His best guess was lymphoma, and said I would most likely be treated with chemotherapy. The biopsy was scheduled for first thing the following Tuesday, April 5.
I showed up at 7am for the biopsy as per their requirements - no food since dinner the night before - but of course I hadn't slept and was thoroughly unrested. The doctors came over and by law had to warn me of the potential risks involved with the procedure: due to the growth's location, there was a risk that the needle could puncture my heart, or my lung, or one of the major arteries in my chest. Wonderful. Exactly what I wanted to hear. I said to them 'Well then ok please do your job well!' The procedure itself went fine, however I am prone to vasovagal reactions - sudden drops in heart rate and blood pressure... basically I faint at the sight of (my own) blood or simply feeling an injection or IV. When they first inserted the IV before the procedure, I warned them that I must be lying down and could not look, but even then I accidentally saw the IV in my arm a minute later and suddenly blood pressure dropped. Drama before the procedure, then again during my recovery when I tried to sit up, and finally, after an extended recovery and having some juice and nuts, they took the IV out and I started to get changed and it happened again - AFTER they took it out! Clearly my hypersensitive system had just had enough. Since I was already lying down and hooked up to machines I was able to remain mostly conscious for each of these episodes (they inverted my bed so the blood would get to my head) and from what I noticed it went as low as 66/19.
Two days after the biopsy I received a call from the director of the lymphoma center and he was able to confirm from the preliminary tests that it was in fact lymphoma, but they had to run further tests to determine which type. I scheduled an appointment with the oncologist for the following Thursday, since there was a near guarantee the final results would be in. My whole family joined me for this one - mom, dad, sister. After waiting nearly two hours to see the doctor, he explained my diagnosis and the recommended treatment in a very clinical fashion, detailing the potential/ likely side effects of treatment. There is a risk of infertility so they advise any young female to go through the egg freezing process. Again in a very matter of fact fashion he explained that they would remove part of my ovary and then once treatment is finished they would surgically replace it. As prepared as I was by that point for the diagnosis and recommended treatment, this was too much... on top of cancer I had to take massive risks with my reproductive organs!? Between this and the hair factor, I broke down. I then asked about nutrition, and he said I could eat whatever I want, 'except raw meat.' Um no, that was not the answer I was looking for.
Needless to say the next day I took all the required steps to set up an appointment with another lymphoma oncologist who came highly recommended from a couple highly trusted sources. After speaking with the receptionist Friday morning and hearing that I might hear back Monday morning regarding an appointment, I ordered all my records and scans and slides to be sent to his office and just before end of day I heard back from the receptionist that the doctor would meet with me on Tuesday. He sent me a personal email that evening after hours and made arrangements for the fertility clinic to follow up with me first thing Monday morning.
The weekend was a whirlwind of logistics and forms, Monday moreso with the fertility clinic, and Tuesday morning I went in to meet the reproductive surgeon. No, I would absolutely not need to remove my ovary.... that's not even a well-established procedure as of yet. I would go through the normal egg freezing process that women elect to do... Seriously How many women would elect to remove their lady parts in such an invasive fashion?? Relief on so many levels. That afternoon I met with Dr. L, and immediately felt so much more comfortable. My Nana was right - there is SO much to be said for bedside manner (she has a bit of a crush on her handsome cardiologist ;), and for explaining things thoroughly, and for not brushing off questions with a terse reply. The treatment is the same, because you don't mess with a treatment with that kind of response rate, but trust in your doctor is crucial. It doesn't hurt that he has a very notable track record.
Given the aggressive nature and bulky size of my growth, he asked that we do a bone marrow biopsy right then and there. Apparently this is typically a 'simple' 15 minute procedure. He numbed my left back hip bone and went for it. I felt the pressure and the twisting of the needle/drill and it was the strangest sensation in the world, knowing he was digging a needle into my bone and sucking out part of my inner being. He was impressed with how I handled it, especially after my warnings regarding the vasovagal reactions. I had also had 10 vials of blood taken at the fertility clinic that morning, and of course, again, had not slept at all due to the extreme referred pain in my shoulder the previous night. He finished and instructed to me to turn over onto my back, slowly and carefully. As soon as I lifted my head I started to feel woozy. He coached me through the turn over, and I lay there for a minute. He rose the incline of my table so I was somewhat propped up and called my dad and sister in (mom was up visiting Nana). I told them I still felt a bit woozy and asked for my carrot juice. My dad handed it to me but as soon as I took a sip I apparently fainted without managing to swallow. At this point I was out cold: I fainted, stopped breathing and turned the color of an eggplant. My table had no side rail and I was not hooked up to machines so my sister ran out into the hall screaming for doctors while my dad made sure I didn't roll off the table. Ten doctors ran into my room and apparently I had no pulse. They hooked me up to oxygen and within an hour I was more or less recovered. It took a while for my brain to reset and a few tries to regain proper word usage and use of my tongue and I kept blacking out for a moment at a time, utterly confusing the heck out of Dr. L and my sister and my dad when I would come back and add a number each time - 'What was that, number 4? Number 5? Omg 8 times now!' - thinking I had full on fainted each time... they had no clue what I was talking about until later that evening. Hah. I put quite a scare into them that day.
The next day was another flurry of appointments - fertility clinic instructions, injection, and more blood, anesthesiologist, an ultrasound, and then on my own I went to see an applied kinesiologist who spent two hours clearing my body of past injury traumas and diagnosing the right dosage of Vitamin D and Brazil nuts (for the selenium) for me to take each day. That evening I started my hormone injections, and it's just been a day by day whirlwind of a process since. I've never had to go to the hospital in my life (save for a few hours at Mass Gen after my car accident senior year for precautionary x-rays.. PS first vasovagal fainting episode when I saw my friend's cut elbow requiring stitches) and in the past month I've been to more doctors appointments and had more procedures that my entire life combined, by a long shot. As much as this completely sucks... I know that with the support of my amazing friends and family and team of excellent healers I will get through this and it will just be a blip in my life. I've gone on many adventures in my life, but this is my first adventure of a medical nature! Stay tuned for the updates... :)