|Posted by Denise on October 29, 2012 at 4:20 AM||comments (4)|
I absolutely love roller coasters. I love the feeling of fear mixed with excitement. I love the anticipation as you sit strapped in your seat listening to the machine below clicking and working to inch you closer to a drop that is just moments away. Then comes the drop, loops and backward spirals while the wind, screams and jolts follow along until your back on level tracks. My road to recovery is very much like these roller coasters, the first few rides are tough and all you can do is close your eyes and scream your way until the end. The times after get easier, you know when the dips and drops come and you can prepare yourself for it, but your stomach will churn no matter what.
My rollercoaster to recovery each month begins with intense fatigue that shuts down my body for two to three days, switching to hibernation mode- no food, hardly any liquid, little interaction with the living, just sleep! After sleeping for an average of 15 hrs a night plus naps during the day the tiredness begins to wear off after day 3 and I try to eat some foods though nausea remains. Bread and fruits were all I ate at the beginning. I would have dreams of pizza and French baguettes while kiwis and oranges would offer my body the liquid it needed to keep going in a more tolerable way than water. When my appetite returns to normal (typically after one week or less) I feast on everything (including some meats) - noodles, rice, veggies and of course my trusted friend- bread! This is usually when I regain more strength and begin to step outside of my walls in Happy Valley and see more faces.
The third week which was last week is one of my stronger periods though my immunity is at its weakest. After day 14 the WBC (white blood cells/count) drop and I become an easy target for infections. Last week I was also sent to do a MRI instead of a PET-CT. According to my doctor one PET scan is equivalent to one year’s worth of X-rays taken every day. I've had 5 PET scans, 2 CT scans and countless number of X-rays all just in three years. I think it's fair to say that I'm well over my limit of radiation! My poor liver! I am however impressed that Professor Kwong took the time to look into my history and make the caring and wise decision to send me to do a MRI scan. It's rare doctors would think about such things and so his doing so gave me hope that he isn't as strict and heartless as how he portrays himself to be.
Thursday was results day. Results for the MRI as well as my blood work. I needed the MRI to show great improvement from my August PET scan in order for us to continue with Bedamustine and I needed my WBC to be in safe ranges and my Neutrophils to be above 1 so I could avoid the expensive injection that also gave me several days of bone pain in my lower back and pelvis. I'm happy to say that my body has done a good job and both MRI and blood work came back with good results.
The MRI shows that the tumors have shrunk significantly from my August scan.There are small ones scattered in my neck, thorax and groin area and the larger ones are in the abdomen with the largest one measuring 3.7cm. Blood work reveals healthy levels of white blood and red blood cells. My Neutrophils are also insafe ranges. All this means that I can continue with Bendamustine and Rituximab (the antibody). Next treatment will be this coming Friday for the usual three days (Nov 2-4).
This last week is when I work hard to prepare myself for the next battle. I try to eat more, take more supplements and just keep my body strong both physically and mentally. I also treasure this last week the most knowing it will be a while until I can cruise again on smooth and level tracks.
P.S. We had a surprise party for Wen Ying on Saturday to celebrate her 24th birthday!
(photo of the two of us attached below)
She has been experiencing more pain in her legs and back and doctors believe it is time for her surgery. She has completed her chemo and has a small procedure to do on Nov 1 where they will somehow freeze or stop one of the veins close to the tumor in her spine so that she doesn't lose so much blood during the surgery.
With the help of many brothers and sisters, she has also been able to leave the hospital the past two Sundays to attend church. It's been a tremendous to see how everyone comes together to shower her with love.
Thanks for keeping us both in your thoughts and prayers <3
|Posted by Denise on September 29, 2012 at 8:30 AM||comments (5)|
I woke up excited for my follow up at Queen Mary, not somuch in anticipation to see Professor Kwong, but mostly due to the fact that Icould go see Wen Ying and the nurses that cared for me during my hospital stay.
Wen Ying was already up sitting in her chair when I gotthere after I got my blood drawn downstairs. She’s been in good spirits and eating A LOT. We took photos together, talked (mainly about all the deliciousfood people have been bringing her) and even had a cup of tea together.Although I had experienced so much physical pain during my previous stay in the hospital, it was evident that the friendship I developed with Wen Ying and the staff as well as memories of the love I received from visitors, some of which was still evident in that hospital, trumped it all. It felt like I had come back to a second home. It felt comfortable, peaceful and joyful, feelings that people, particularly patients, generally wouldn’t describe to have when walking into a hospital.
Unfortunately, we didn’t have much time with Wen Ying, I had to return back downstairs and see Professor Kwong, get stitches removed from my lymph node biopsy as well as get an injection to boost my white blood count (so we later learned).
The consultation was short, as expected.
After examining me, he explained I will most likely be ableto use a lighter chemo drug this time around. Last time he gave me DHAP, a cocktailof harsh and strong chemo drugs. The drugs seemed to have worked in my body but it brought with it a lot of side effects and damage to my body, so he would like to switch to a lighter one and feels its possible at this stage where I’m not as serious as when I was first admitted (apparently he said it was really serious and he wasn’t even sure if DHAP would work on me).
So my next chemo drug will be Bendamustine, a lighter chemo with less side effects, plus the Rituximab that I have been receiving both in my chemo treatment in 2010 as well as this past time with Professor Kwong.
My second round will once again take place next Friday-Sunday (October 5-7) in Queen Mary Hospital, 21/F, bed # TBA, but I’m hoping and will request to be back beside Wen Ying. It’s a three day chemo like last time, and if all goes well, I’ll be able to be discharged and return home either on Sunday or Monday (I’m thinking Monday is most probable). I will first have an x-ray Friday morning to see if there’s still water in my lungs. If there isn’t the green light is on for Bendamustine to be administered.
We entered his office prepared with a list of questions – how many chemo treatments will I have to do? when will we do another scan? what happens if there is water in my lungs? what is Michelle’s result for the bone marrow match?
Many of our questions were given the exact same answer: “don’t worry about it now, we’ll deal with it as it comes along.”
Frustrating as it was in the moment, I look back at it now and realize it’s a principle we should all be living by. If you think about your day, how many minutes or hours even do you spend thinking, planning, worrying,contemplating, envisioning, speculating about and working for your future. Yetwe don’t even know what will happen in the next minute, let alone the next month or year. Jesus puts it nicely in Matthew 6:34 when he said, “therefore,do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”
It’s actually easier to put this into practice when you have cancer. But even in just this past week when strength and energy has come back I have found that I’ve reverted to spending too much time in the future rather than in the present moment of life. The health we have today, the people we have in our lives in this moment in time, the tea I sip on as I write this, and even the pain in my back (from the injection for my white blood count) are to be embraced with thankfulness and if possible with joy simply because we’re alive today, at this second to experience it.
There’s a quote I love that goes like this: “If you worry about what might be, what might have been, you will ignore what is.”
|Posted by Denise on September 25, 2012 at 10:00 AM||comments (4)|
Leave it to me to set up a to do list for my time of recovery at home. Being the planner and organizer that I am I've woken up each morning this week with a list of things (stored in my head) to do. You'll be relieved to know that my to do's were not anything close to my previous lists that may have included organizing a party for a friend, finishing a sales analysis report for work or picking up some last minute groceries for a new recipe, all before meeting up with a friend for dinner.
Though my list during my first week home has been simple tasks like eating more, eating something other than bread or drinking one more cup of liquid a day, it was just as mentally and physically demanding. Standing long enough to take a shower and even sitting long enough to finish a meal (which takes a lot longer now that i enjoy food much less and also chew much slower) required so much of the little energy I had. These simple, mundane actions that I never even acknowledged as tasks became not only tasks but goals.
Today I'm writing with much more energy and a proud achiever of many of my goals which went from eating three meals a day to incorporating healthier (though admittedly less tasty) foods and health supplements into my meals. Some went from keeping down my dinner to cooking dinner for my parents and myself; and to some people's disappointment going from reading my emails to responding to emails and even writing up some simple reports for work- Don't worry work is more of a past time than actual work.
Showering and food have been my biggest hurdles. Now that I have a Hickman line in me, or in simpler terms, now that I have tubes coming out of me and an opening where it comes out of to take care of, showering has become a huge hassle. The prep and clean up time to take a shower is longer than the shower itself and my first shower back home exhausted me to the point where I was weak in my knees and had to lie down. Cleaning the wounds and the opening is another chore that takes a lot of time and patience and my first experience left me dizzy and nauseous, perhaps from the sight of the wounds and the stitches or perhaps from being overwhelmed by the 20 plus steps you must follow to clean the wounds. Infection is my worst enemy at the moment and the tubes and wounds need to be cleaned following the strictest hygienic rules. A nurse also needs to come once a week to flush and pump the tubes to prevent it from clogging and fortunately she will also help with the outward cleaning as well.
Food on the other hand is a different kind of challenge. Part of the challenges are mental and part of it is physical. There are foods (both scent and taste) that remind me of the hospital and there are foods that I've been eating for 20 odd years of my life that just does not settle well with my stomach (like tomato sauce in spaghetti, but not tomato sauce on pizza, weird right?). Then there's the loss of my taste buds and the metallic taste in my mouth (by the way these are all side effects from the chemo) that turns once loved and even coveted foods like figs or nuts that I could never have just one of, into mediocre foods that no longer brought joy to my stomach and my soul. Now I fully understand the notion behind comfort food or how cinnamon always reminds me of Thanksgiving and Christmas back in Canada. I wish I could explain how my apples and pasta sauces taste. They definitely don't taste better, if anything blander, but it's not so much the taste but the difference in what your mind expects it to be and what your tongue tastes it to be that makes it difficult to swallow. This I know will come back in time and I'm sure thankful for that; so don't worry all you foodie friends, I'll be back trying that new restaurant or recipe with you in no time
Other (known) side effects I'm experiencing are ringing in my ears, difficulty sleeping, loss of hair (I've decided to shave my head) and numbness in my right chin down to my neck (this is from the biopsy surgery where I think they ended up clipping part of my nerves, so unfortunately this is permanent).
Still I love where life has taken me. And it's been the love I've been so blessed to receive and experience that keeps me inspired. I've received so much love, undeserving love, overwhelming love, indescribable love, from family, friends, the church community, strangers and most of all from the author of love itself, God. I realize that I'm fortunate to have so much love in my life and realize that many live a love-less life, not out of their own choice but simply because it's how the cards were dealt. I'm thankful that my soul is filled with love and joy and hope that it can overflow to others that I encounter each day.
I return back to see Prof Kwong on the 26th (tmw) for blood tests and discussion about my next chemo. I'm not looking forward to being down again from chemo and can only place my hope in His love and mercy for me that never runs dry.
P.S Wen Ying finished another round of chemo, she was feeling really tired and weak with typical side effects of nausea and loss of appetite. She has recently begun to eat again as brothers and sisters have been so gracious in making, buying and delivering her favorite comfort foods for her. She begins chemo again either on Friday or Saturday and she remains in good spirits.
|Posted by Denise on September 15, 2012 at 2:25 AM||comments (2)|
What a journey. The past 19 days spent in Queen Mary Hospital have been eventful to say the least. Who knew so much of life can happenin just 19 days. It’s like being sent off to summer camp, except this time Inever signed up for it, nor was I at all prepared for it.
When I asked my mom to take me to the emergency room, I was thinking, one or two nights MAX in the hospital, some blood work, some x-rays,certainly nothing invasive or aggressive.
But here I am, back at home, beaten up, but still intact.
My body has gone through countless unsuccessful jabs to my veins, leaving me bruised all over, a bone marrow biopsy, a lymph node biopsy,a puncture into my lungs to drain out fluid (which the surgeon didn’t do a good job at), TWO Hickman procedures because the first one wasn’t done correctly and five days of chemo, two of which were target chemo.
I haven’t had the time or energy to process it emotionally but I’m pretty tired on that front at as well. All procedures except for my lymph node biopsy I was awake and conscious for so it was a huge stress on mymental well being. I had to ask the nurses to talk me through each step, each jab, each poke, each pull. It was no longer, one day at a time, but one procedure, one jab at a time, asking God for mercy for each puncture into my body.
Today is the first day that I’m strong enough to sit in front of the computer to write this update. My friends have been helping me with my previous updates. Sorry for the silence, I know many of you are worried and wondering.
It’s been great being home. I feel my recovery gaining speed since my return.
This path I’m on is obviously not my choice. Everyone who knows me, knows I’m terrified of chemo and that I’ve always believed in natural healing. My previous posts have explained my choice for more alternative treatments, but I’ve always consulted the big guy up there that’s ultimately in control and I’ve honestly never heard or felt Him asking me to take another route- until now.
I’ll never understand why He had to wait until now to show me which route to take. He could have saved me from a lot of pain and heartache. But it’s not my job to question Him, it’s my job to obey and follow.I continue to trust that God knows all and has a plan.
The biggest encouragement and confirmation that He’s at work is introducing a new friend, sister in Christ (friends who came to visit me the first day I moved into the private ward brought her to know Christ) and fellow cancer fighter into my life. Her name is Wen Ying. A strong, beautiful, resilientyoung woman; 24 years young to be exact, and fighting bone cancer alone in HongKong while her family is back in Xian. She was working in Hong Kong when shewas diagnosed and has been in the hospital for 2 months and will need at leastanother 2 more months of treatment. Her cancer is aggressive and complicated.The tumor that sits on her spine is about half the size of an average orange.She’s already been through one surgery and after 1 more month of chemo tocontain and eliminate the cancer cells that still remain she will go through another major surgery, this time over 20 hours long. This surgery may leave her without the use of her legs and bowels as they will need to scrape part of her nerves to get a clean cut. Despite such news and projections from the doctors,her spirit remains lively and joyful.
So I can’t help but think that, if my condition wasn’t that serious, I would have never had to stay in the hospital for so long and I would have never met Wen Ying, and she may never have had the opportunity to know God and experience His love. As many valleys as there were in the past two and a half weeks, there’s also been many high moments. Friends rallied together to love on us, decorating our room (it looked like a party room with balloons, origamidecorations, posters etc), feeding us, buying us food we craved, singing to us,praying over us, cooking for my parents, cooking for me, even bringing communion to us! Laughter filled our room each day and each time I looked over at Wen Ying from my bed and saw the big smile on her face, I knew that this is where God wanted me to be.
When you think of me and say a prayer for me, I’d also appreciate you saying a prayer for her as well. My prayer is ultimately for her to truly feel and experience His love. It’s what will get her through; it’s what’s getting me through each day and each trial.
When I have energy again I will try to update more on my medical treatments that will follow.
With lots and lots of love,
|Posted by Denise on September 11, 2012 at 12:10 PM||comments (1)|
Mon, 10 Sep 2012 10:43AM
Past two/three days have been a blur. It's been very 'sun fu' and I've been very weak.
Chemo has left me with no appetite, always wanting to vomit but no strength to vomit and nothing in my stomach to vomit. Can't really keep down fluids either. And no strength to go to the bathroom on my own.
I know each day gets better but the days and nights are extremely long. I worry about my kidneys and also that I'll become dehydrated, but that's the worrier inside me.
Today, praise God, I ate a few spoonfuls of oatmeal and have been able to take in some hot tea. I've lost 5kg since Thursday though I'm sure a lot of it is from the water built up in my stomach and lungs. Doctor asked me to try to drink more to flush out the dead cancer cells but everything must be done very slowly at this point.
I need to have another round of the antibody Rituximab today. Had a bad reaction the first time so I'm really praying I'll be okay today since I'm already so weak.
Thanks for the cheers, the prayers and the love.
Tue, Sep 11, 2012 at 11:49 AM
Survivied Ritueimab! YA! The drip started at 1:30pm yesteraday and I was able to sleep through most part of it. No fever or extremely bad reaction this time so praise God!
Currently I'm feeling dizzy and weak.
Please pray for strength and an apettie to return. Also, pray that I will be discharged soon (hopefully tmr or sometimes this week) so I can rest at home until my next chemo session.
It's been a tough week but God has been guiding me through each step of the way
|Posted by Denise on September 6, 2012 at 7:10 AM||comments (1)|
Here's a very very brief summary of my last week or so...
- felt really bad after church
- stomach severely bloated
- difficulty in breathing
- heart rate high
- asked my mom to take me to the hospital
- arrived at emergency and heart rate was sky high, but bc of the high heart rate they immediately have me a bed and rushed me off to do tests and have doctors come see me
- about 2 hrs later I was given a bed in the public ward where they take most of the emergency cases
- I was blessed with a bed by the window and bc most of the people have to wear diapers I mainly had the bathroom to myself
- had a lot of tests done, at this point I can't even remember which tests
- bone marrow biopsy done: just as painful
- had enough of public ward as I couldn't sleep most nights. Slept maybe 3-4 hrs a night.
- also decided we wanted to see a specific doctor, professor Kwong who you can only request to see if you're in private
- afternoon sent to private ward
- had a tube put into my lungs to drain fluid: very painful procedure
- I've been breathing with oxygen since Thursday
- had first dose of Rituximab: a antibody chemo that I also had in my last chemo regiment
- reacted quite badly: extremely cold, then high fever, then extremely hot and broke out in a few rashes
- reaction died down after an hour or so
- no appetite
- day of rest
- still little appetite, feeling very week
- got to wash my hair properly and get bathed
- first day without fever since 26th
- appetite returned
- got tube taken out, fluid wasn't draining properly and doctor discovered tube wasn't put in deep enough > <
- rested and ate well
- got Hickman line put in: only under local anesthesia; so an emotional and mentally stressful procedure for me
- still good appetite and preparing for Thursday
- lymph node biopsy under general anesthesia in the morning.
- Originally planned to start chemo regiment (DHAP) and possibly have R (Rituximab) today but this is now postponed to Friday (tomorrow) instead. X-ray report showed that the Hickman line was put too far in thus a minor procedure was needed to make adjustment to pull it back out a little.
- Appetite back.
- Rested well, good appetite.
- Started chemo drip in the evening 8:05pm- they prepped me with three bottles of fluid and nutrients, 1 very expensive anti vomit pill that they dont give in public ward (:0), and 1 extra injection of anti vomit medicine. Will drip until 4 in the morning and will have steroid eye drops every four hours.
- A wound from an injection i received this afternoon in my arm started to bleed which is weird :S
- Here's a verse for you all, may you also be encouraged and continue to have faith: "Surely God is my salvation; i will trust and not be afraid. The Lord, the Lord is my strength and my song; he has become my salvation" Isaiah 12:2
It's been an extremely tough week but I'm continuing to stay positive and can also see the many blessings and even joy in my present circumstances. For one, I am constantly showered with lots of love from friends and family and have also made a new friend (my roomie) who is also a young lady fighting cancer. I don't have much time or energy to get into specifics but will try to send my updates out when I can.
Mandy will be helping me post updates so you're aware of what's going on.
Thanks for the Iove and prayers. I'm extremely blessed.
|Posted by Denise on August 17, 2012 at 10:25 PM||comments (4)|
A young woman recently discovered the reason for her difficulty in breathing was due to pressure on her kidneys from her tumors that have been present since the relapse of her lymphoma in May 2011. Should she:
A) go away to a cancer institute to try to get healed naturally
B) follow the advice of her old oncologist, Dr Liang, who recommends immediate chemotherapy (Rituximab and Bendamustine, a protocol more tolerant than the traditional R-CHOP that most receive)
C) take her chances on Ukraine, a cocktail mix of low dose chemotherapy and plant extracts (alkaloids). This is a protocol introduced by Dr Rigo and a more unconventional chemotherapy treatment
D) search for other natural cancer treatments available all over the world and continue seeking advice from different clinical/integrative/alternative oncologists
If this were like the game show, I'd choose to take the money and leave. But life doesnt work that way and there's no option to 'opt out' safely; you must answer the question, you must make the decision and keep playing the game. These decisions are difficult to say the least, this one in particular has been more difficult than any other I've had to make in the past. If all things go wrong the stakes are extremely high- life or kidney failure; so the question is can I bank on the fact that all things won't go wrong.
At first I used my own logical thinking along with the advice from my team of doctors - Prof Liang, Dr Rigo, Dr Cindy Chan, and managed to eliminate option A and D.
Left with B and C, I weighed out the pros and cons but was still stumped. Rituximab + Bendamustine (R+B) had all the clinical data showing fairly promising results. But R+B would also severely debilitate my immune system and with the way lymphoma works (my one in particular), the chances of it returning are high and having a strong immune system is key to fighting it off. Yes you can rebuild your immune system but some parts of it are so damaged that it will take years on end for it to return to 'normal'. Plus this would be my second helping at traditional chemo and I've heard countless stories where people have died not from the cancer but from the treatment. It's also been interesting to me that more times than not it has been the people who have gone through chemotherapy themselves or their family members that ask me not to do chemo just yet.
Ukraine on the other hand is less popular because it's a mix of allopathic and alternative medicine and frankly BigPharma's aren't going to support these type of cocktails because it means less use of their concoctions and thus less money. Thats as far as I'll go in terms of discussing politics here but unfortunately politics is involved which makes decision making all that much harder.
The chemotherapy drug is at a very low dose and the side effects of it are said to be neutralized from the plant extracts. There are clinical studies for Ukraine but not as many and information on it is harder to find making it somehow harder to believe in it. Perhaps its that (false?) notion of the more people using a product or service, the better or more trustworthy the product or service is. After doing the research I do believe it to be safer than R+B, but the real diemma is whether the time used to try Ukraine would be considered safe or too valuable of a time to be 'playing' with.
Without any luck figuring it out on my own I used one of the life lines and called a friend. This Friend has been present since day one and has guided me through every tough decision, comforted me through every valley and strengthened me at my weakest moments. He's there 24/7. And so, distressed with the decision and the little time I had to make it, I quickly rang Him and asked for His advice.
Luckily in this 'game' I'm able to call as many times as I want or need and so in those two extremely torturous days, I found myself in tears and on my knees begging God to just tell me which path to take. After my pleading and cries I still didn't hear His voice which frustrated me and still frustrates me today to know that He knows the best answer yet He chooses to remain 'silent'.
I continued on my process of elimination and 'polled the audience'- my family and friends but in this case their opinions wouldn't make too much of a difference because at the end of the day it is my body and I have to give the final answer.
None of my 'life lines' seemed to really help me and I was back at square one.
It was 12am, my PET-CT was in 9 hrs and my consultation with Dr Liang when he would ask for my final answer would just be a few hours after the scan. Dr Rigo suggested we try Ukraine for 1 cycle (15 days) and reassess whether I should go for the R+B. He too was worried about time, but he believes in Ukraine and said we would see results in that short amount of time. I thought it was a fair deal for my body but there was still fear; what if I'm making a mistake, what if it doesn't work, what if my kidneys deteriorate over those 15 days or longer, my head swarmed with "what if's". But then a very wise man - my brother in law :), simply said: "if God isn't giving you a clear answer you just need to trust that whatever decision you make He will use it for His purpose and He will be there to carry you through it" So there it was, I went with my gut and had my final answer- Ukraine, but continued to ask God to either confirm my decision with peace or make it unbelievably clear that I should go for conventional chemo.
The next day was unpleasant. I got a good lecture from Prof Liang which brought back childhood memories of being scolded. There's no way around arguing with the professor! But he did let down finally and gave me assurance that he would treat me should I need it in the future. The professor is a good doctor, a solid one, a highly reputable one, a kind one - and all this made it that much more difficult to reject his advice.
This week has been my first week on Ukraine. We're starting off really slow 1cc at a time and building up to 5, then 10 then 15 and finally 20. Typically the normal person can begin with 5cc's right off the bat but Dr Rigo is worried that my kidneys may not be able to handle the toxins released from the dead cancer cells. There's a schedule I follow so it's not treatment every day. Sometimes its two days on two days off, or one day on and two days off. I've responded positively so far, meaning no bad reactions. Both my mom and I see a slight difference in the swelling of my stomach where a lot of the tumors are so that's a really good sign although we don't know if it's Ukraine or if it's the other injections I've been getting every day into the lymph node. Either way it doesn't matter
Ukraine is administered in the buttocks again (I had another injection in the bum but that has been stopped momentarily). It's painful because the medicine is thicker and more acidic and the larger the dose the longer he needs to take to inject the medicine. Once we get to a higher dose (eg 5cc or more) we will need to try to administer it intravenously, so im really praying for healthy visible veins because I really don't want to have to go for another surgery to put a port catheter in.
After treatment I'm more tired than usual but it's nothing that keeps me from going about my days. I am also experiencing greater peace in my decision and find that my fear has been replaced by His faith.
I won't know for a while whether my final answer will get me through to the next round but it doesn't matter now because I know that some how everything will be okay and that my life lines will always be there no matter how this game of life turns out.
|Posted by Denise on July 30, 2012 at 11:05 AM||comments (3)|
My vivid imagination has taken me through journeys of blissfulness and serenity but it has also brought me to hopeless, lonely and fearful places.
As a child I could easily dream up stories of having a puppy or a piglet that would talk to me and I to him (Chatlotte's Web was one of my favourite children's stories). As an older kid I’ve hoped to have my own live M&M as a friend (the yellow one, he's the nicer one). And even as an adult I am known to name all my stuffed animals or figurines and treat them like real live beings with feelings. Charlie has been my most notorious bear who has worked on the computer with me while drinking a cup of tea, became Charlene for a day when Michelle decided to put a dress on him/her, and has even practiced yoga, holding poses for hours on end.
At the same time, my imagination is also capable of convincing me that something or someone has turned up in the dark when the lights are turned off or that my fingers will run wild during a piano recital. Lately, it’s been fears of this new treatment with Dr Rigo failing.
I’ve mentioned briefly that it’s been emotionally challenging to have all the natural therapies ‘fail’ on me. The disease could have spread further or quickly if it weren’t for these treatments but it certainly hasn’t reduced or contained the disease. Alternative treatments are what I truly believe in. I believe that our bodies are able to heal itself. I believe in foods that heal. I believe in certain treatments like high dose IVC, a vegan, sugar free, whole food diet, in supplements that can boost certain parts of your body that may be lacking. And I certainly believe in the power of prayer and a positive mindset that can ‘talk’ any disease away. So for my belief to ‘fail’ me has been a bit of a struggle and I’m not too sure how many more disappoints my heart or my body can go through.
I begin this new treatment on Wednesday and by then I hope my fears will be replaced by courage and belief. The power of belief can change a treatment for better or worse and so my dilemma has been to choose between protecting my body or my heart.
More details about my treatment are below:
- I begin on a 21 day treatment on Wednesday
- the treatment is an injection in my right paraaortic lymph node
- the dose will increase each day until I can get to the desired dosage (0.5ml) that my doctor wants
- during my treatment: I’m to be on a low sodium near vegan diet (I’m allowed fish) although I may just stick to my vegan diet
- “side effects”: possible slight fever and fatigue
- the 21 day ViscHom treatment is meant to reduce the size of the lymph nodes and the following treatments- 10 injections of a combination of nutrients, minerals, vitamins etc and the use of another cancer ‘drug’ (registered under the National Cancer Institute)that is meant to work on the cell’s of my body, bringing it to death or to health.
|Posted by Denise on July 26, 2012 at 10:35 AM||comments (2)|
The past two weeks have been a strain on my brain. Days were spent hopping from one doctor to another and my nightly readings consisted of new treatment regiments, up and coming drugs, doctor biographies etc. On top of all that I was studying for an exam for my Nutrition program.
I had paid visits to Chinese doctors, western doctors, nutritionists, naturopaths, oncologists and spoken to friends of friends that may have any kind of knowledge on either allopathic or alternative medicine. Currently, I’m still waiting to see and speak to two other doctors.
The decision on my treatment plan is never an easy one. Particularly this time, where the disease seems to be progressing and affecting my organ which means giving conventional treatment a serious thought.
I know that among my readers there are believers in both camps – conventional and alternative. I deeply appreciate your concerns for my well being and I also understand your worries about my decision.
Please know that I take these decisions seriously. It is true that I may secretly hope for alternative treatment to be the way out, but I also do not disregard the need for traditional treatments. I believe in doing what is best for my body, whether that is alternative treatments or an integrative approach of conventional coupled with natural treatments.
I have been seeking for that next (or hopefully one) treatment since my last blog entry. And it’s been a tiring and emotionally draining experience. Every doctor has his or her ‘solution’ to my ‘problem’. They were confident in their approach and gave persuasive arguments to why I should give it a try, yet little did they understand the handful of treatments I have put my body and mind through in this past year has taken my emotions on a roller coaster that I want to get off of. I'm tired of being a guinea pig and the strength and will power to stick to another treatment that may or may not work is dwindling down fast! Chemotherapy is always a quick fix option (and at times even temporarily easier than alternative treatments), but that had never sat well with me and I wouldn’t turn to it for the sole reason of being emotionally tired.
Either way I’m confident that God will show me the path to take and I know that if I’m walking in His path I’m in safe hands.
For those that are interested below are brief summaries of what the doctors/specialists have been saying:
Dr Cindy Chan, Specialist in Medicine
*she has been the doctor that has been caring for me since I left the care of my oncologist at the Sanatorium/QM
- supplements: IP6&inositol, mushroom extract, enzymes, trans Factor Plus, wheat germ extract
- budwig diet
- PET-CT scan
- focus on getting bowel movements to twice a day
Miles Price- Nutritionist with research in cancer
- enzyme therapy
- add more protein to the diet: morning and afternoon
- liver test: to test health of phase 1&2
- I’ve done the liver test and am waiting for the results now
- He will most likely NOT be my primary care provider and may just go to him for specific issues
Richard Wickes- Manual therapist
- helps with pain and other issues I'm not even aware of
- he was able to read my emotional distress just through the energies coming from my body
- the emotional stress triggers reactions in my body and he ‘fixes’ them
- I don't understand completely what he does, it’s all very gentle work but somehow I feel better and lighter after our sessions
Dr Xu Kai- Chinese Doc from HKU
- recommend chemo
- need to shrink the lymph nodes so it doesn't affect my organs
- my body is too weak to 'accept'/react to the medicine that Dr Ma was giving me (the other Chinese doctor I had been seeing)
- body is weak and will work to build my body up but not claiming to get rid of the cancer
- I took the medicine for 1 week but think that with all the things I’m taking and all the doctors I’m seeing my time can be used in other and better ways since the medicine is not to help the cancer anyway
Dr Roland Leung- clinical oncologist QM
- suggested rituximab, a target therapy I took last chemo, with something else (as in other chemotherapy drugs)
- go back to see Prof Liang, says he’s the best in Hong Kong
- worried about pressure on kidneys
- suggest re-staging = PET-CT
- cancer still considered slow growing
- bone marrow biopsy not completely necessary (very happy to hear that and will remember this when I see Prof Liang)
Archie Tse- oncologist and researcher of cancer drugs (Ka's friend in the states)
- stem cell or bone marrow transplant: riskiest but would be the likeliest cure
* general info on follicular lymphoma:
- a slow growing, indolent cancer
- there’s no cure for follicular lymphoma at the moment
- the median survival is 10 years
- chemotherapy given is to eradicate the cancer cells but they will most likely come back in which one is supposed to go through another round of chemo. It is seen as more like a chronic illness- ‘easy’ to treat (meaning it responds well to chemo), but hard to cure and will be harder and harder to treat as time goes by.
Dr Rubin- alternative clinical oncologist
- mailed him my scans and waiting for his reply
-he’s extremely busy so the earliest appointment I could get was end of August
Dr Tam and team – naturopathic doctor & medical doctors who have treated cancer
-presented a ‘drug’ called P56, no side effects but supposedly effective on lymphoma
-lymphoma is a result of pushing myself too much and making my immune system go in over drive
-have emailed my reports to him but have yet to hear back from him
It was by chance that I had the opportunity to meet with this doctor. I ran into a friend one day that I hadn’t spoken to in a long time (she’s a naturopathic practitioner) and through our brief 5 minute conversation in the streets of Central I slipped in a request for her to look out for any treatments or doctors that may be able to guide me through my journey. Approximately 2 weeks later, I wake up to an email from her telling me about this new oncologist who will be starting at her clinic in September but is in town this week and has agreed to see me (on his vacation!) I quickly said yes and here’s the summary to our meeting:
Dr Rigo- clinical oncologist
-we started off chatting about Hong Kong, Beijing, Shanghai (he just moved from Shanghai after living there for 3 years) and I immediately saw a difference between him and other doctors. He didn’t get right into the nit and grit of the consultation but tried to understand and get to know me and my history. (patient-doctor care and communication: +1)
- he’s half Italian, half Mexican (an interesting mix I thought), schooled in Paris, worked in Paris, Germany, Mexico, Netherlands, Shanghai and now Hong Kong. He has two clinics, one in Mexico and another in Shanghai. (international working experience: +1)
- Having worked in Germany I knew he would have access to the advanced (and I mean at least 5 years) knowledge the Germans have on medicine, particularly integrative medicine. He mentioned there were over 400 clinics dedicated to integrative oncology in Germany alone, and it was a very common thing there, but he addressed the problem of Germans being ‘horrible at marketing their ideas’ and ‘letting the rest of the world benefit from their intellectual findings’. (knowledge of new treatments that have been proven clinically effective, which is EXTREMELY rare in integrative and alternative treatments: +2)
- He took a sample of my blood, examined it immediately under the microscope and explained what he found in my blood. He said:
- my immune system is severely depressed
- my white blood cells have been compromised by heavy metals due to the chemotheraphy (it’s actually pretty cool, you can see all this on the computer screen)
- the ‘soldiers’ my wbc send out are very few
- red blood cells are okay but need more
- my terraine (meaning where the wbc and rbc thrive’ is superb! Yay
(analyzes the blood himself rather than sending it off to a lab, quick, efficient and shows he knows what he’s doing: +1)
-after analyzing my blood and immediately consulting with doctors in Germany (he even sent them photos of my blood sample), he came up with an action plan!
- 21 day injection into my right paraaortic lymph node (which is supposed to be the main lymph node that connects to other lymph nodes) of a mix of very low dose chemotherapy drugs plus whole plant extracts that completely negate the side effects of the chemo. This is to clean the lymph nodes. Oh and I forgot to mention the coolest part. This cocktail mix will be created specifically for my DNA, which means the drugs will be prepared (in Germany) and when they are sent to Hong Kong, it is for me only and no one else. (drug made specifically for my body and my DNA: +5)
- followed with a 10 day injection of 3 other treatments. This is also an injection but into a vein. These are a mix of natural substances.
-he’s treated hundreds of lymphoma patients using this method which has also been used by other integrative oncologists like himself, for over 20 years.
- when asked about the efficacy of it on myself in particular he told me that after looking at my blood and my case he’s fairly confident it will work and if he wasn’t confident he would recommend chemotherapy. (honesty and knowing he has my best interest: +5)
- we then went on to speak about diet: no dairy, no meat, though am allowed some deep sea fish, and he even made suggestions of places to go to for cheese free Sicilian style pizza in Hong Kong (sharing a love of food and being concerned about diet: +2)
- we ended our 3 hour session talking about his fear of flying (though he flies every 45 days) and snakes and my fear of anything that flies (which he found very funny). His whole point of addressing fear was actually to lead me into any psychological needs/support I may need during this journey. (I told him I was okay and had a good support system at the moment, but now I’m wondering if I told him I needed the psychological treatment whether he would’ve spent another hour talking to me about it haha. Anyway this is a definite +1)
In the end, after discussing it briefly with my parents and praying about it I messaged Dr Rigo last night confirming I will go ahead with his treatment (he told me time is important and he is worried about my bloating so would like to act fast). He messaged me back and told me my blood smear had been shipped to Germany by express last night and we should receive the medicine in about 8 days! Praise God! (immediate response +1, for a total of 20/20, a perfect vision from God for this part of my journey)
When I left Dr Rigo’s office yesterday I couldn’t help but think how God had cleverly planned everything from the beginning. I had been praying for direction and for Him to speak clearly to me but in the back of my mind I always had the notion of two roads: chemotherapy (and doing what I can to support my body through it) or some other alternative treatment. Never would have I imagined for God to ‘dream’ up this other path for me to take, one that has the more immediate effects of chemotherapy and still uses some chemotherapy drugs though in really low doses and not in traditional methods of application but also one where I feel completely at ease and peace about because of the absence of side effects. One of the first verses I memorized as an adult Christian was Jeremiah 33:3 “Call to me and I will answer you and tell you great and unsearchable things you do not know”. God certainly heard my cries (literally) to Him and kept His promise of revealing great, unimaginable plans for me (even if it is just for the next month).
Future plans and scans:
- PET-CT next Friday, August 3
- getting back in touch with Prof Liang on August 7 when he will discuss my PET-CT reports with me
|Posted by Denise on July 12, 2012 at 9:10 AM||comments (4)|
A month and a half has quickly passed and the strict lifestyle I've had to adhere to has become more of a routine rather than a struggle.
Every morning mom makes my Chinese meds which I down with a crinkled nose and chase with a piece of bread or cracker (yeah not much of a chaser but you’ll soon see that my diet has been limited). Lunches and dinners have been more difficult especially being a vegan who is also restricted from eating fruits, dairy,all things raw and all things sour (including tomatoes!). In the end I was lefteating grains and cooked vegetables and even had to resort to having my morning muesli with rice milk.
Doctor Ma, the Chinese doc initially told me I'd be a lot better in a month anda half so I succumbed to his methods and gave him his requested time to workhis magic.
The first week was encouraging. My appetite returned, I was going to the bathroom more regularly (something that's been proven extremely difficult as Ibecome more and more bloated) and I no longer took midnight visits to the loo.
The second week onwards were less exciting. The bloating came back, (swellingin both the stomach and legs) and the big problem of eliminating came backagain. Funny enough Phuket brought me healthy bowels (usually traveling doesthe opposite for people) but I also started feeling swelling in my pelvis.
Needless to say, with the way I’ve been feeling I wasn’t toohopeful come report day. Here are the results:
- largest lymph node the radiologist had been monitoring had increased to 7cmin size from 4cm. Considering the changes in previous scans which was onlypoint something of a centimeter, this growth is huge.
- lymphocyte reading has increased. This is good news! It shows increasedimmunity and my doc and I have been trying to get it passed 2 for a long time.Last blood result was approx 1.4 and this one was 2.8
- CA125 reading (cancer markings of the ovary) has increased. Doc isn’t tooconcerned about this but says my hormones are out of whack
- LDH levels have increased (this is supposed to be a marker of how fast thecancer is growing). This can be read in two ways.
1. Before thecancer cell dies it inflames hence the LDH increase
2. Simply that the cancer is growing
- we (as in doc and I) don’t know how to really read this since blood work andscan is somewhat contradictory.
- we’ve discussed this with the TCM doc, Dr Ma, and his unhelpful response wasthat ‘this is normal’. He also suggested I stop the meds for the time beinguntil I feel better. Our conclusion from his conclusion: he doesn’t really knowwhat he’s doing and so I’m going to stop for the time being and go back to whatI know and trust to be a healthy diet.
My response to theresults in a nut shell:
- confused, disappointed, a bit bitter, upset, lonely, tired of it all
- thankful for support of family
- glad to be back on juicing and eating fresh salads
Current pseudo treatment:
- the Budwig diet: which consists of cottage cheese and flax oil
- juicing fruits and veggies
- using the i relief machine that’s supposed to help with circulation
- weekly colonics
- more rest! I’ve moved my work computer home and will be working from homemore
I’ve been seeing several other doctors and am scheduled tosee more this and next week to try to figure things out. Will keep you allupdated.