Brain surgery. You never really think it is going to happen to you. Well it is happening. Tomorrow morning. We drove to Mayo’s ER in the middle of the night Monday because I was having really bad headaches and running a really high temp.
Per the recommendation from my sister and her distain for my uneven sideburns, I received my first haircut since regrowth! How fun. But I must admit I was a little sad. I didn’t want to cut one little strand off.
I don’t really know why hair is a mini obsession of mine. I have really learned how much we are defined by our looks. Another aspect is loving something you never thought you could do/pull off. Being bald was liberating. The buzz look was healthy and a little GI Jane. The new pixy is whimsical.
PS: Yes, I was taking photos in the bathroom waiting for my mom and sister. Keeping it classy!
Recap: 6 R-CHOP, 2 3-Day R-ICE, Auto Stem Cell Transplant, 5 weeks of IMRT Radiation killed my massive tumor in my chest. Some Lymphoma cells lived and started to grow in November. New tumors biopsied on 1/15 and we found it was Lymphoma a week later. The new cancer cells are growing in an odd pattern around my sternum. I am now getting radiation and on the waiting list for recurring Large Diffused B Cell Lymphoma clinical trials.
Mid-way through SBRT Radiation and I am feeling much better! The arch formed across my chest has deflated, the redness reduced, and the burning, shooting pain has disappeared. YEAH! Being in severe pain is exhausting. I spent many-a-hours all looped up on oral Dilaudid. And I hate pain meds. They are addicting whether you like it or not. Now I have the sweats and headaches, but not nearly as bad as the IV drugs. I lasted a long time not taking any, but for a week I couldn’t take it anymore. Pain.
So, needless to say, the radiation is killing off those Lymphoma cells. But I shall remind myself, and you, that radiation will not be enough. As my Dr. likes to demonstrate- interlace your fingers and wiggle them- that is what my disease looks like. It is so interlocked with fibrosis tissues that it will be nearly impossible to reach all the cancer cells. Therefore, the clinical trial is absolutely necessary to ‘hit a home run’. As I have to remind my doctors I am not looking for that ‘home run’. I am content knowing that I will never be cured of this thing called LDBC Lymphoma. This doesn’t make me less optimistic, nor do I have less of the fight left in me. I am just so happy that I can wake up each day and be mobile and of sound mind.
Jenna, Patty and I met with my team on Monday 2/11 – so happy to be back on my favorite Dr’s service- (he is a Fellow interviewing for a position at Mayo for the Neuro-Oncologist department. He likes the great challenge of brain cancers because it is so undiscovered and deadly. The humbled nature of this young Middle Eastern man with flakes of dandruff on his shoulders will bring great advances to the world of cancer. And I love his Ninja abilities. He shows up everywhere and fast.) – to discuss and revisit my clinical trial after 2 weeks of first hearing about it. These are the notes from the meeting:
~’Phase One Trial- really good pre-clinical data’
~’Very hard to stamp into remission, but this drug has very good indicators of stamping ppl into remission.’
~’Other drugs extend (life), this drug has very good chance of ‘homerun’.’
~’Investigational treatment- DRUG clinical trial- investigation of that drug’
~’No clinical trials in Phase Three for your case of Lymphoma’
~’Ask study coordinator about reproductive protection- if considered sterile do I need to be on 2 forms of birth control for trial?’
~”PICC Line for trial?’
~’If cancer is growing is it (drug) not working’
~’PET Scans during clinical trials.’
~’There is relative little disease compared to what we were dealing with last year.’
~’10 clinical trials for my case of Lymphoma.’
~’Considering another clinical trial- but no space for a while. In the same line as the other drug.’
~’You are making a mark on radiation’
~’This is going to be how we do this kind of thing in the future.’
~’Ahh condoms’ (Referring to me not even chancing it by having sex)
~’My cancer acted different; therefore, couldn’t be the same.’ (Me explaining how I felt new cancer growing)
~’Katie, we can’t trust Lymphoma.’
~’Do we waste your health, time and energy (on other treatments)?’
~’I’m (Dr.) kinda in the mood of waiting.’
~’We (Dr.s) are looking at everything in the world for you. If something in Swaziland makes sense for you, we’re sending you there.’
~’Starting (or rather making a decision) week of 3/2.’
~’I (Katie) love the Mayo app on the Ipad. I look at all my labs and clinical notes.’
~’Is that an Ipad (Dr looking directly my non-Apple phone).’ -I love that these are the people ‘curing cancer’, but don’t have the time to know what an Ipad is. There are more important things I suppose.
~’Infinitely worse actors than Lymphoma (ovarian and melanoma) this drug will be approved for.’
~’The longevity of trial is very very good.’
~’Katie your body is fighting, but there is a threshold barrier.’
~’The steroids you are on will counter the drugs. Start to taper after radiation.’
~’Speaking in terms of theory alone to come see me in 25 years I am not going to keep using 50s chemo.’
~’Oh Katie, the pain is in your chest, not in your head.’
~’With what we biopsied, no surprise that conventional treatments didn’t work.’
~’Basically like going into glue-they wouldn’t be able to close your chest.’ (Revisiting the surgical removal option)
Thinking about the difference between Western and Eastern medicine. I was at the Cancer Center library looking at books related to Alternative Medicine. I really resonate with this passage,
Western medicine views many illnesses as random occurrences. The victims of “incurable diseases” are powerless pawns of fate. They are just “unlucky”. There is alternative view though. If we take the concept that illness is a message from our bodies to our minds, as question waiting to be answered then it means that you can potentially find a solution to any illness. The Encyclopedia of Energy Healing by Andy Baggott
I cannot tell you how many times people, those close and those not so close, have looked at me like this- Unlucky. I have felt this from day one. As I became more and more okay with my new life the feeling has all but gone away. I truly embrace that there is a different way of looking at illness and taking the divine destiny element out. Many people just can’t wrap their heads around this. Challenge the mind. It will take you places beyond belief.
Time heals all wounds. Okay- it allows for digestion. The last 3 weeks were like sitting down to Thanksgiving dinner and eating until it is so uncomfortable you have to undo your pants. Aside from forced vomiting, nothing but time can make you feel better. That is how I have dealt with the fact that I like to defeat odds and need further specialized treatment. Time.
At Mayo last week we came up with a comprehensive, integrative, and hopeful plan to target the new disease. As my Radiation Oncologist stated, “It is a big treatment Failure. We have not seen anything like it.”
Plan of action:
1. SBRT- Stereotactic Body Radiation Therapy for 10 sessions starting soon. It delivers precise, high doses of radiation to the tumor. It is equivalent of 25 sessions of IMRT (my previous radiation) in the 10 sessions of SBRT. The side effects are going to be mostly to the sternum (no more contact sports… darn) and to my skin (blistering, lesions, sunburn, spider veins, etc.).
-Our goal is to shrink the tumors to relieve my pain and keep the lymphoma settled.
2. After radiation join a clinical trail testing the effectiveness of a drug that activates the immune system to fight off the cancer. Clinical trails are never a guarantee and the process to get in is very long and tedious.
Many have questioned if removal of disease via surgery is possible? Yes, I too had a dream that they sliced me open started to scrap it out. Well turns out that my Hematologist thought about it, but since there is so much fibrosis and scar tissue intermingling with the lymphoma cells it is impossible. I really need some of those vital organs in my chest.
The day after I returned from Mayo I went to meet with a Ayurvedic expert to gather knowledge of a more holistic approach to care. I have been very pensive lately thinking of all the possible ways I can approach a holistic health plan. I considered all the “I cure cancer diets” (the Gerson diet, macrobiotic diet, and keytogenic diet), and I just don’t think harsh changes of eliminating certain foods is the right thing to do. I am intrigued by each one and see how they could work for some. Right now I am more focused on connecting mind, spirit, and body. That is where Ayurveda comes in.
This ancient Indian health system combines all elements and can work cohesively with modern medicine. There is no all or nothing. And for now there are still lots of options for me and modern medicine. Now if it comes to a point where all efforts have been exhausted then you will find me in some remote place getting 5 coffee enemas a day.
1. To start via the recommendation from my Hematologist and Ayurvedic NP get a reverse osmosis water system installed in home.
2. Eat all organic (since I don’t buy/consume alcohol this makes buying organic a little more feasible, but it does put a damped in the pocket-book… the price is well worth it!)
3. Limit cold/raw foods to sooth the digestive system.
4. If I can digest milk, buy non homogenized milk. Have only at night with spices and warm.
5. Maintain a morning routine of drinking a glass of hot water, scrapping the tongue (apparently your tongue can tell you a lot about your health), messaging the body with coconut oil (letting it sit for 15 min), do yoga, meditate, shower, then eat and have tea.
6. Take an herbal blood cleansing and digestive cleansing regiment.
7. Overall, my vata is out of balance and do all things to get this dosha back into alignment
It is an adventure to see how the modern and holistic ways can combine into one integrative approach. There has been a lot of advancement at major medical institutions, but honestly it is all done internally. Start from within and understand your body is interconnected to everything you put into it. Garbage in = Garbage out (yeah I learned that in Economics). The body is a temple.