I haven't written in a while because we have just been too too busy. However, just a quick update (as I know some people think that things are bad when I don't write)...
Latest blood work came back improved! My white cell count had been hovering between 17 and 18 thousand (so super high! which is an effect the Hodgkin's has) and the last blood work showed it down to just above 15 thousand. Also, all the nodes in my neck - including the one that was the largest and the most annoying - have SHRUNK! My oncologist was thrilled when she did my exam, and made sure that I got my blood work results right away. I think every time I walk in there she is surprised and thrilled. I know she has her skepticism, but she definitely is glad that I'm doing well.
So - status is no longer stable - status is IMPROVEMENT! LOVE THIS!
I'll update more later - Tong Ren, Tui Na, Homeopathy, etc... all good things :)
Thursday, September 11, 2014
Monday, July 14, 2014
Thirty...
On July 11th, I turned thirty. Yup, the big 3-0. Of my close group of friends I'm the last one to hit this big milestone. It kind of snuck up on me. Since our lives became so chaotic with diagnoses, treatments, grief, birth and relapse, birthdays seem to slip down the totem poll of priorities. Plus, Lochlan's first birthday is coming up and that seems way more interesting than my 30th.
But, being that I have amazing friends whom I've known since elementary and middle school, they took me out and we had a blast! We went bowling - an activity where the worse you are, the more fun you have as it is increasingly evident that you are never going to become a professional bowler, or even manage to get a score past the double digits. We laughed 'til we cried, and stayed out way past my bedtime, and never once questioned each other about where we were "headed" in life.
Birthdays seem to give you a realization that you are actually older than you were the day before - even if you don't feel like it. I realized that in just 30 years I have experienced things that many people don't see until they are 60 or 70, if at all, in their life. Sure, I have a lot of friends my age who have gotten married, bought a house and had a couple kids. That's pretty par for the course. But it's this damn cancer thing that's pushed me beyond the typical and forced me to face the reality of life and how short it is before most people my age even think about death as a tangible possibility.
While I'm very sure that the world is going to be stuck with me for quite some time yet (let's face it - I'm too stubborn to let cancer have it's way), loosing a child is something that I'm sure has shaved a few years off the endpoint of my life. The basic stress that it puts on someone mentally just can't be measured. (Well, I'm sure some neuroscientist out there has some theory...) But I think even more than that, it is alienating. Not to everyone, and not completely, but you become an enigma in most circumstances that leaves you wanting for the "normal" encounters that you used to have with the rest of the world. (Enter the AWESOME world of Camp Sunshine! where I'm pretty sure we all wish we could live full time as a commune of like minded "crazies.") Life's little "problems" become petty, and tolerance for ignorance, stupidity, and bullshit becomes pretty much nil. You suddenly become "enlightened" to the fact that the phrase "life sucks, and then you die" is pretty much spot on, and you might as well do things that mater and leave the rest alone.
So.... At the ripe old age of 30, I have done some things I had always wanted to, some that I never wanted to, and some that I never dreamed I'd do. I've faced challenges while laughing, cried tears while escaping, and managed to get out of bed every day. And while life is far from perfect, and - let's face it - often far from fair, if I'm going to be kicking around for another 30+ years, I better do some things that are pretty amazing while I'm here.
But, being that I have amazing friends whom I've known since elementary and middle school, they took me out and we had a blast! We went bowling - an activity where the worse you are, the more fun you have as it is increasingly evident that you are never going to become a professional bowler, or even manage to get a score past the double digits. We laughed 'til we cried, and stayed out way past my bedtime, and never once questioned each other about where we were "headed" in life.
Birthdays seem to give you a realization that you are actually older than you were the day before - even if you don't feel like it. I realized that in just 30 years I have experienced things that many people don't see until they are 60 or 70, if at all, in their life. Sure, I have a lot of friends my age who have gotten married, bought a house and had a couple kids. That's pretty par for the course. But it's this damn cancer thing that's pushed me beyond the typical and forced me to face the reality of life and how short it is before most people my age even think about death as a tangible possibility.
While I'm very sure that the world is going to be stuck with me for quite some time yet (let's face it - I'm too stubborn to let cancer have it's way), loosing a child is something that I'm sure has shaved a few years off the endpoint of my life. The basic stress that it puts on someone mentally just can't be measured. (Well, I'm sure some neuroscientist out there has some theory...) But I think even more than that, it is alienating. Not to everyone, and not completely, but you become an enigma in most circumstances that leaves you wanting for the "normal" encounters that you used to have with the rest of the world. (Enter the AWESOME world of Camp Sunshine! where I'm pretty sure we all wish we could live full time as a commune of like minded "crazies.") Life's little "problems" become petty, and tolerance for ignorance, stupidity, and bullshit becomes pretty much nil. You suddenly become "enlightened" to the fact that the phrase "life sucks, and then you die" is pretty much spot on, and you might as well do things that mater and leave the rest alone.
So.... At the ripe old age of 30, I have done some things I had always wanted to, some that I never wanted to, and some that I never dreamed I'd do. I've faced challenges while laughing, cried tears while escaping, and managed to get out of bed every day. And while life is far from perfect, and - let's face it - often far from fair, if I'm going to be kicking around for another 30+ years, I better do some things that are pretty amazing while I'm here.
Friday, June 27, 2014
Trying to make a difference
Aside from starting a non profit foundation, I help Mike with our business, CareAline Products. We see every day how our products, that we designed for Saoirse, help kids and adults around the world live more comfortably with PICC and central lines. We never realized that our little idea would be such and important improvement in the lives of all kinds of patients. We also never realized how hard it is to get a medical product - especially a new idea in the world of medicine - off the ground and into the hands of hospitals. While we have made major headway, and overcome a lot of hurdles, there are still many that we have yet to get over, and I'm sure even some that we haven't encountered!
WE NEED YOUR HELP!
Here are two ways that you can help us and help lots of patients all at the same time!
1) Our Indiegogo Campaign!
We are raising funds to help us overcome some of our current road blocks. We have started a campaign on Indiegogo and you can help us by sharing it with your friends and family and on social media like Facebook and Twitter. Also, please watch the video on our page and consider making a contribution, even if it's "just" $1. (if everyone who saw our campaign donated a dollar, we could help so many people!)
Just share this link : http://www.igg.me/at/CareAline
Thank you for sharing and for all your support!
2) What is up with medical billing?!?
If you know a lot about medical billing and how codes get reimbursed by hospitals and/or home medical supply companies, we need your help! We are trying to navigate the world of medical billing codes to find ones that will allow hospitals, home care facilities, and PATIENTS get reimbursed so that they don't have to pay out of pocket (mostly if hospitals can bill it out to patients' insurance, they will have them in the hospital so the patients don't have to find them on their own!). If you know billing codes, please consider helping us find the right way to get our products covered by insurance. Contact us at info@carealine.com and we can tell you where we stand so far.
THANK YOU!
WE NEED YOUR HELP!
Here are two ways that you can help us and help lots of patients all at the same time!
1) Our Indiegogo Campaign!
We are raising funds to help us overcome some of our current road blocks. We have started a campaign on Indiegogo and you can help us by sharing it with your friends and family and on social media like Facebook and Twitter. Also, please watch the video on our page and consider making a contribution, even if it's "just" $1. (if everyone who saw our campaign donated a dollar, we could help so many people!)
Just share this link : http://www.igg.me/at/CareAline
Thank you for sharing and for all your support!
2) What is up with medical billing?!?
If you know a lot about medical billing and how codes get reimbursed by hospitals and/or home medical supply companies, we need your help! We are trying to navigate the world of medical billing codes to find ones that will allow hospitals, home care facilities, and PATIENTS get reimbursed so that they don't have to pay out of pocket (mostly if hospitals can bill it out to patients' insurance, they will have them in the hospital so the patients don't have to find them on their own!). If you know billing codes, please consider helping us find the right way to get our products covered by insurance. Contact us at info@carealine.com and we can tell you where we stand so far.
THANK YOU!
Monday, June 16, 2014
Off Track....
We have been traveling for the past month. It was a mix of work and pleasure, and a lot of visiting family. (I'll share more about the trip in a few posts over the next week.)
It was a good trip, but since we have returned, I have been feeling off track. I just feel like we had just started to get a rhythm going before we left, and then the trip threw it all off. Focusing has been hard - with all the laundry to do, things to put away, and exhaustion that comes with being on the road for so long. I think I just need to start in and try and get back into the routine and rhythm and try and get back to "normal" (whatever that is).
I think some of the problem is that I am not seeing as much progress as I would like with my treatment. While things seem to be pretty much stable, I don't feel like there is any improvement in the size of the lymph nodes in my neck. I was hoping that after 2 months on treatment there would at least be some sign that they were starting to go down, and while the other symptoms seem to be stabilized and I do feel more like myself, I'm just disappointed that things are going slowly.
I have a appointment with Dr. Ramakrishnan this week, and oncology appointment next week, and I'll be making sure to get in to do my Tong Ren, and add in some Tui Na. I'm also researching hydrogen peroxide therapy to see if it is something I want to add to my plan and try and kick start my healing a little bit.
More to come on the trip soon, but here is a little sneak peek at some photos....
It was a good trip, but since we have returned, I have been feeling off track. I just feel like we had just started to get a rhythm going before we left, and then the trip threw it all off. Focusing has been hard - with all the laundry to do, things to put away, and exhaustion that comes with being on the road for so long. I think I just need to start in and try and get back into the routine and rhythm and try and get back to "normal" (whatever that is).
I think some of the problem is that I am not seeing as much progress as I would like with my treatment. While things seem to be pretty much stable, I don't feel like there is any improvement in the size of the lymph nodes in my neck. I was hoping that after 2 months on treatment there would at least be some sign that they were starting to go down, and while the other symptoms seem to be stabilized and I do feel more like myself, I'm just disappointed that things are going slowly.
I have a appointment with Dr. Ramakrishnan this week, and oncology appointment next week, and I'll be making sure to get in to do my Tong Ren, and add in some Tui Na. I'm also researching hydrogen peroxide therapy to see if it is something I want to add to my plan and try and kick start my healing a little bit.
More to come on the trip soon, but here is a little sneak peek at some photos....
Sunday, June 1, 2014
Four....
Four year olds have dance recitals. Saoirse would have loved being in a dance recital.
Happy Fourth Birthday Saoirse - I hope you are dancing today and every day.
Happy Fourth Birthday Saoirse - I hope you are dancing today and every day.
Sunday, May 11, 2014
Mother's Day...
Family
We are a family of four that looks like three,
My mommy, my daddy, my sister and me.
If you look at our portrait, just three you will see,
No sister in sight, just mom dad and me.
But if you look closer, just past my head,
you will see a little something fluffy and red.
It's not a new blanket, that stays in my bed,
It's Elmo, in place of my sister instead.
If you ask mom how it feels to be a new mother,
She'll stop, and smile and remember another.
Then tell you her story, which is unlike any other,
For Saoirse made her mom, and I'm the LITTLE brother.
We are a family of four that looks like three,
My mommy, my daddy, my sister and me.
If you look at our portrait, just three you will see,
No sister in sight, just mom dad and me.
But if you look closer, just past my head,
you will see a little something fluffy and red.
It's not a new blanket, that stays in my bed,
It's Elmo, in place of my sister instead.
If you ask mom how it feels to be a new mother,
She'll stop, and smile and remember another.
Then tell you her story, which is unlike any other,
For Saoirse made her mom, and I'm the LITTLE brother.
Monday, April 28, 2014
Week 3 and Tong Ren
Week 3 went by without major event. Lochlan turned 9 months (I can't believe it), and cut another tooth. Up to 4 now! I went to see my oncologist, and she is happy with where I am. She trusts that I will call her if anything changes. The node in my neck is the same. My night sweats have decreased in frequency and severity, and my weight has remained stable (no gain, but no loss!). These are all good signs (I was loosing half to one pound per week in the 2 months before I started treatment). I'm sleeping well, have more energy, and have been feeling less "out of it." I'm glad that at least I'm sleeping better, as sleep deprivation really wears on me.
I also decided to attend a Tong Ren healing anti-cancer class in Haverhill this weekend. Tong Ren is an energy based healing derived from eastern medicine theories and the principal of the collective unconscious. It's fascinating, and while I can't explain it myself, I was pleased to attend and hear a true explanation from one of the practitioners. I am excited to continue to learn more about it and attend the classes and experience some of the other healing modalities that are part of the Tom Tam healing system. Tui Na is one that I'm particularly interested in, and hoping to experience before we start traveling in May.
It's been sort of a tough time recently emotionally. I so much want to be positive and have positive energy in me all the time, but my anger and frustrations take over so easily. I find myself blowing up and loosing my patience quickly. Little things can ruin my morning, afternoon or even my day. It seems to never be anything predictable (other than when Lochlan decides he doesn't want to nap), and it is mostly just a culmination of lots of little things and just one too many to handle. I'm hoping that I can do some acupuncture, Tui Na, yoga and more healing in the next couple weeks. More walking in the fresh spring air should help too.
I also decided to attend a Tong Ren healing anti-cancer class in Haverhill this weekend. Tong Ren is an energy based healing derived from eastern medicine theories and the principal of the collective unconscious. It's fascinating, and while I can't explain it myself, I was pleased to attend and hear a true explanation from one of the practitioners. I am excited to continue to learn more about it and attend the classes and experience some of the other healing modalities that are part of the Tom Tam healing system. Tui Na is one that I'm particularly interested in, and hoping to experience before we start traveling in May.
It's been sort of a tough time recently emotionally. I so much want to be positive and have positive energy in me all the time, but my anger and frustrations take over so easily. I find myself blowing up and loosing my patience quickly. Little things can ruin my morning, afternoon or even my day. It seems to never be anything predictable (other than when Lochlan decides he doesn't want to nap), and it is mostly just a culmination of lots of little things and just one too many to handle. I'm hoping that I can do some acupuncture, Tui Na, yoga and more healing in the next couple weeks. More walking in the fresh spring air should help too.
Monday, April 21, 2014
Week 2
Second week done. This week was carcinocin. Still no side effects, but definitely starting to feel a bit more energy. It could also be because the weather is finally turning warmer, and the winter is slowly subsiding. I have managed to accomplish a lot o things around the house, which feels really great. Time with friends has definitely helped a lot too!
I have an oncology appointment this Friday and will be getting a good once over. I will be scheduling scans for June. Hopefully that will have been enough time to see a change and know if the treatment is having an effect.
I have an oncology appointment this Friday and will be getting a good once over. I will be scheduling scans for June. Hopefully that will have been enough time to see a change and know if the treatment is having an effect.
Saturday, April 12, 2014
Week 1
I just finished the first week of my therapy. I started last Friday, and so far so good. It's a little strange - not feeling bad or being in the hospital to get cancer treatment. I have a little water bottle, and it has in marker written on it - "Kezia's medicine. Do Not Touch!"
I just started my second week yesterday, and switched to my second remedy. Odd number weeks (1,3 etc) I take Hekla Lava. Even number weeks (2,4 etc) I take Carcinosin.
I have an oncology appointment in two weeks and will be scheduling blood work and the next set of scans which will happen in the 2nd or 3rd month of the treatment.
Next up is to schedule some chiropractic and acupuncture. And it's getting into smoothie season!
Thursday, March 20, 2014
D-day the sequel..... Relapse
This post has been written over the past two months. In an effort to document all that went on without revealing it to the public until final results were in. This is cancer.....
Sometime in late December/early January -
I had a sore throat and a stuffy nose. I figured I was getting a cold. I felt one of the lymph nodes in my neck was a little big, but it was the same side that my ear was all congested. I drank some apple cider vinegar for two days. The node seemed to go down a little. I forgot about it.
January 23rd -
at 2 am when Lochlan woke up, I had a pain in my abdomen. Once I got him down to sleep, I was very uncomfortable. I couldn't get back to sleep. When he woke up two hours later, I couldn't stand up. I was in so much pain. It was on my lower right side, so Mike said we had to go to the ER. He called my dad and we went up to Beverly when he got here to take the baby.
We got checked in and they did their standard stuff. It wasn't too busy, so we went back right away. They ordered a CT and blood work to see what was going on, and asked for a urine sample - it was a little pink - this gave them an idea that maybe it was more likely a kidney infection not my appendix (a huge plus!). I went in for my CT and then we waited...... and waited...... and waited.......
The doctor finally came in - I had a 4 mm kidney stone. Unfortunately, that wasn't the only thing they saw on my CT. My lymph nodes near my left aorta were swollen - and bigger than my last CT they had on file. The radiologist said he would not have flagged them without my having a history, which just means they were not very large, but I was told to call my oncologist.
I called and left a message. And waited......
January 24th -
Went down to check in with our pattern maker to go over our next order of products. The first thing she said to me was that I had lost so much weight. Granted she hasn't seen me since I was 9 months pregnant, but the last time I had someone tell me how much weight I lost, I had cancer.
January 25th -
I broke down. I was terrified. I can't imagine what I will do if this all means what it could. We went to confide in my parents. I hated to do it. I didn't want to do that to them and make them worry. We also called friends, and got some reassurance that it could be ok.
January 26th -
Emily's birthday - I was reminded of her birthday three years ago when I didn't call her because I had been diagnosed with cancer two days before. No one wants to hear their best friend has cancer on their birthday. I called her the next day. This year I got to call her on her birthday. I didn't tell her about the lymph nodes. I did tell her a bout the kidney stone.
I found out about a yoga inversion workshop meant to boost the immune system, clean out the lymphatic system, and cleanse the kidneys. I went. I was having kidney pain when I went in. Ten minutes in, it was gone. I felt great when I left. I needed that.
January 27th -
Had to go to Vermont all day to do training with our distributor for the products. Put on some nicer pants, and they buttoned. A month ago I was using an elastic as the top button didn't reach. No news still from the oncologist. Still waiting.....
January 28th -
Called the oncologist again. Someone was supposed to call me, but apparently didn't. Scan is being moved up. Waiting to hear what day, but none available this week, so it will be next week. I'm sick to my stomach waiting. I'm on edge and can't focus. Still waiting....
January 29th -
Finally got a scan scheduled - nothing before the 5th available, so it's on the 7th at 9am. Labs before. Then Tuesday following for my appointment. It's too bad that cancer doesn't take weekends off.
January 30th -
Making plans to see some friends. Trying to stay distracted from everything going on. Went to mom's group, and it was good for Lochlan to see some other babies. He really likes socializing now. He's getting so big.
January 31st -
Just trying to get work done. I have so much to do. Have been reading about alternative treatments and the story of Billy Best. I will not do chemo again. Not as the first step definitely.
February 4th -
World Cancer Day. I don't want to hear about it. And Wes has relapsed. The world is so unfair.
February 6th -
Went to NYC for a couple days. Got to stay with friends, but didn't get enough time there. It definitely didn't distract me enough. All I could think about was my scan. I hate that it takes over life. And I don't even get to find anything out tomorrow. I have to wait until tuesday night! Way to make a girl go crazy. On top of that, I woke up with the pain from the stone again. On top of that, when the neighbor came to drop off our keys (she watched Fallon), she said I looked great and that she could see I was loosing the baby weight. Why does cancer have to make complements into anxiety spiking terror bombs! I hate cancer.
February 7th -
Scans this morning. Now the waiting continues. I won't get the results until tuesday night. At least I got to se Lori - who always does my scans. She is such a sweetheart. First thing she wanted to do was see pictures of Lochlan! Love her! Now I have to pump and dump for 24 hours. Whomever came up with the phrase "don't cry over spilt milk" never pumped and threw away precious breast milk!
February 10th -
Saw the urologist today. Apparently I passed the stone. Probably on Thursday when I had the pain again. It passed before the scan on Friday, so he used my CT to confirm that it was gone. Apparently now I have to make sure not to eat too many oxalates. I guess I need to space out my spinach intake.
February 11th -
Saw my oncologist today. Strangely, the radiologist had only read half my scan. She called to ask why, and then pulled up my scan to take a look herself. She said while she's a little concerned that I have some swollen lymph nodes, she still thinks there are a lot of other reasons they could be swollen. My blood work looked great with the exception of a high white cell count. But between the stone and fighting a cold, she kind of expects it to be high. I'm not anemic, which is a very good sign as I had always been anemic before I was treated (really since I was in high school!). So, to hopefully rule it out completely, she is sending me for a PET scan. Only downside to this, I have to pump and dump again, and with this scan, I have to not touch Lochlan for 10 hours. I guess he will be going to grammy and grampa camp for the night.
February 18th -
Scan day. Had to get everything ready for Lochlan to go to my parents. Got over to the scan 20 minutes late. Oops. Oh well - they understood. I was done before he even went down for his morning nap, so when I knew he was asleep, I came home and did some work and got ready to go do some errands. I left when he woke up so he wouldn't see me. I worked the rest of the day, and seemed to make not nearly as much headway as I wanted. I should have just sewed and felt like I accomplished something. Watched "The Butler" - great movie!
February 19th -
Went to pick up Lochlan - he was VERY excited to see me. He had slept the whole night (lucky grammy and grampa!) and had a pretty good morning. Driving was slow to get there as the roads were bad from snow, but I got there. He napped there so he wouldn't fall asleep in the car, and then we headed home just to head out to the doctor's.
Not the results we wanted. The PET scan came back positive. I have uptake in nodes in my neck, chest and abdomen. Not nearly as many as when I was first diagnosed, but definitely enough to be truly concerned. There are still things to rule out, so off to have a biopsy I go. This time they have to go into my neck, as I don't have any convenient armpit ones that showed on the scan. (boo) So it's a new doctor for this biopsy. I see him Friday for a consult, and then the surgery will be next week hopefully.
I talked to her about alternative therapies. She said if that's what I want, then I'm a good candidate. I have a slow growing disease, so it gives me time to be able to do therapies that are slightly slower acting. I have an arsenal of things I'm reading about, so I will wait for the biopsy. In the meantime, I will get my primary care transferred over to the homeopathic doctor that the baby goes to.
February 21st -
Met with the doctor who will be doing my biopsy. I like him. I think we will be a good fit. Still waiting to schedule the date as they have to get everything authorized by insurance, but it will be soon. He's going to try and do it without putting me under so I don't have to dump my milk. I will still be restricted from picking up Lochlan for 48 hours. That is not going to be fun.
February 23rd -
Lochlan is 7 months today. I just am so distracted. I can't focus on anything, and I just want to sleep. I hate cancer.
February 24th -
Trying to get this biopsy scheduled. She asked if there were any days I couldn't do in the next .... 2 MONTHS! I surly hope that this doesn't go that far. That's ridiculous. We'll see what she says when she calls back. Have to get myself switched for primary care. Will have to do a pre-op appointment.
February 28th -
I can't believe February is over. Why hasn't all this been resolved? I have so much to do for Dance For Saoirse and I can't focus. I just wish I could take a time out from testing until .... well never.
March 1st -
I got the baby's cold. This truly sucks. I have to get better before Thursday. I can't put off this biopsy!
March 3rd -
This cold really really sucks! I'm so nervous I won't be better in time. I hope they will do it even if I'm coughing. I don't have a fever, so I think I might be good.
March 4th -
Found out the only way they won't do it is if I have a fever or fluid in my lungs. I have neither. Good to go seems like. It would still be nice if I felt better. I'm so sick of waiting for results of things. I am so annoyed that it has taken so long to get all the testing done. It's been over a month! When the kids are suspected of relapse, their tests are done within a week and results are known. Why do we have to be so patient when we are adults? No wonder people have to do toxic treatments - diagnosis takes so long, the disease has spread before you even know what it is!
March 6th -
Biopsy day. Got out of the house on time. Not drinking and nursing sucks. So thirsty! Fast tracked through prep and intake. I guess he really wanted to get going! Fine by me, less down time (I didn't even get to read any of my book!). They decided to put me under (I think especially because of the coughing) but the anesthesiologist said that I only had to pump and dump once and then I could go back to nursing! No pre-meds - just wheeled me into the OR (I told them I didn't need to be "loopy" to go back there. It doesn't bother me). I remember them starting the propofol and then I woke up in recovery about an hour later. They let me sleep some more in recovery (until about noon) because they know I have a baby at home (honestly, it's probably the best sleep I've had since I was pregnant with Lochlan). They didn't have any results back from biopsy. I found out he took 4 nodes - including the largest one (which turned out to be about 2.5cm not 3). They should have plenty to test from those. I was told that we should know within 48 hours what it is. Now we wait
March 7th -
I was hoping to hear something by the end of the day today. No word. I hate waiting. Maybe it means its nothing. Hodgkin's usually is very obvious (they were 99% sure within an hour after my first biopsy at my original diagnosis). I wonder what this is? Still hoping that maybe it means that its nothing because they can't find anything to "name" it.
March 8th -
Diaper derby and flash mob! I have to remember not to lift things. It's really hard. Especially when your 7 month old just wants to hang on you and climb on you! I hate not being able to pick him up. He's so annoyed with me.
March 10th -
Still waiting. Called the oncologist to see if they knew anything. Nothing is back. I hate waiting.
March 11th -
Got the call from the surgeon today - it's Hodgkin's - Relapse. Dr. Bering called a little later. She will schedule me with a consult at Dana-Farber. This is to prep for possibly needing to do conventional treatment later. I am starting with natural/alternative methods. I have a lot of calls to make. I'm hoping to find someone to coordinate it all and guide me through it. I have some calls to make, but hopefully will find someone in MA not in NH (the one contact I have is up there) and someone who takes insurance. This just really sucks. I feel so bad for Lochlan. He shouldn't have to go through this.
March 12th -
Woke up after the baby slept all night. Went to pee - came back up to nurse him and was in EXCRUCIATING pain! The same spot it was the last time I had the kidney stone, but 10x worse! Mike called my dad and had him come over - I was yelling and swearing and screaming in pain - they called an ambulance. My first ride in an ambulance. I actually asked for pain meds at the ER - this was by far the worst pain I've ever felt. First pain med did nothing. They ordered dilaudid, and a CT. The pain was slowly going away, but not completely. Confirmed - another kidney stone - this one 6mm. There's no way I was passing this one. They tried to have me get up and move to see if I could go home - not happening. I was admitted. First overnight in the hospital for something other than having a baby. I ended up in the pediatric unit because it was the only private room (Mike is a magic talker when it comes to getting private rooms). The nurses were able to get my pain under control and I finally got some sleep. The baby missed me so much and had a rough night at home. Surgery tomorrow.
March 13th -
I didn't pass the stone overnight so the surgery to take it out was still on. They did an x-ray to see where the stone was - it hadn't moved. Mike brought Lochlan to see me in the morning before I had to go down to surgery. I hadn't had pain med for a while so I got to nurse him. He liked that. Went down before noon to get prepped, and saw a bunch of nurses that I had seen last Thursday. Went over all the same stuff - same anesthesia as last week, pump and dump once, will have pain after because of stent put in to keep tubes open after surgery, will have to have stent out next week. At this point they should just say "anything new we need to know? No? Let's do this!" I don't like being a frequent flier in the hospital. They got it out! I asked to see it - it was all jagged and horrible looking. I would not have wanted that to go through! The stent is uncomfortable, but it's better than the stone. Finally got to eat something, and they said I can go home! Lochlan will be pleased.
March 18th -
Stent removal is apparently as painful as having a stone. Not right away, just long enough later to pop up on the ride home and make getting into the house miserable and have me begging for pain meds. They could have warned me about that before I left the office.
March 19th -
Finally got the stitches out of my neck! They were driving me crazy! Got to share a little more of my/our story with the doctor - I should have dropped off cards for the dance-a-thon - maybe he would come :)
I'll keep sharing about my plans for treatment. I meet with a doctor at Dana-Farber tomorrow to see what conventional options exist at this point. My plan is to coordinate my alternative therapies with my home doctors first, and keep Dana-Farber as a last resort.
Thanks for all the support.
Sometime in late December/early January -
I had a sore throat and a stuffy nose. I figured I was getting a cold. I felt one of the lymph nodes in my neck was a little big, but it was the same side that my ear was all congested. I drank some apple cider vinegar for two days. The node seemed to go down a little. I forgot about it.
January 23rd -
at 2 am when Lochlan woke up, I had a pain in my abdomen. Once I got him down to sleep, I was very uncomfortable. I couldn't get back to sleep. When he woke up two hours later, I couldn't stand up. I was in so much pain. It was on my lower right side, so Mike said we had to go to the ER. He called my dad and we went up to Beverly when he got here to take the baby.
We got checked in and they did their standard stuff. It wasn't too busy, so we went back right away. They ordered a CT and blood work to see what was going on, and asked for a urine sample - it was a little pink - this gave them an idea that maybe it was more likely a kidney infection not my appendix (a huge plus!). I went in for my CT and then we waited...... and waited...... and waited.......
The doctor finally came in - I had a 4 mm kidney stone. Unfortunately, that wasn't the only thing they saw on my CT. My lymph nodes near my left aorta were swollen - and bigger than my last CT they had on file. The radiologist said he would not have flagged them without my having a history, which just means they were not very large, but I was told to call my oncologist.
I called and left a message. And waited......
January 24th -
Went down to check in with our pattern maker to go over our next order of products. The first thing she said to me was that I had lost so much weight. Granted she hasn't seen me since I was 9 months pregnant, but the last time I had someone tell me how much weight I lost, I had cancer.
January 25th -
I broke down. I was terrified. I can't imagine what I will do if this all means what it could. We went to confide in my parents. I hated to do it. I didn't want to do that to them and make them worry. We also called friends, and got some reassurance that it could be ok.
January 26th -
Emily's birthday - I was reminded of her birthday three years ago when I didn't call her because I had been diagnosed with cancer two days before. No one wants to hear their best friend has cancer on their birthday. I called her the next day. This year I got to call her on her birthday. I didn't tell her about the lymph nodes. I did tell her a bout the kidney stone.
I found out about a yoga inversion workshop meant to boost the immune system, clean out the lymphatic system, and cleanse the kidneys. I went. I was having kidney pain when I went in. Ten minutes in, it was gone. I felt great when I left. I needed that.
January 27th -
Had to go to Vermont all day to do training with our distributor for the products. Put on some nicer pants, and they buttoned. A month ago I was using an elastic as the top button didn't reach. No news still from the oncologist. Still waiting.....
January 28th -
Called the oncologist again. Someone was supposed to call me, but apparently didn't. Scan is being moved up. Waiting to hear what day, but none available this week, so it will be next week. I'm sick to my stomach waiting. I'm on edge and can't focus. Still waiting....
January 29th -
Finally got a scan scheduled - nothing before the 5th available, so it's on the 7th at 9am. Labs before. Then Tuesday following for my appointment. It's too bad that cancer doesn't take weekends off.
January 30th -
Making plans to see some friends. Trying to stay distracted from everything going on. Went to mom's group, and it was good for Lochlan to see some other babies. He really likes socializing now. He's getting so big.
January 31st -
Just trying to get work done. I have so much to do. Have been reading about alternative treatments and the story of Billy Best. I will not do chemo again. Not as the first step definitely.
February 4th -
World Cancer Day. I don't want to hear about it. And Wes has relapsed. The world is so unfair.
February 6th -
Went to NYC for a couple days. Got to stay with friends, but didn't get enough time there. It definitely didn't distract me enough. All I could think about was my scan. I hate that it takes over life. And I don't even get to find anything out tomorrow. I have to wait until tuesday night! Way to make a girl go crazy. On top of that, I woke up with the pain from the stone again. On top of that, when the neighbor came to drop off our keys (she watched Fallon), she said I looked great and that she could see I was loosing the baby weight. Why does cancer have to make complements into anxiety spiking terror bombs! I hate cancer.
February 7th -
Scans this morning. Now the waiting continues. I won't get the results until tuesday night. At least I got to se Lori - who always does my scans. She is such a sweetheart. First thing she wanted to do was see pictures of Lochlan! Love her! Now I have to pump and dump for 24 hours. Whomever came up with the phrase "don't cry over spilt milk" never pumped and threw away precious breast milk!
February 10th -
Saw the urologist today. Apparently I passed the stone. Probably on Thursday when I had the pain again. It passed before the scan on Friday, so he used my CT to confirm that it was gone. Apparently now I have to make sure not to eat too many oxalates. I guess I need to space out my spinach intake.
February 11th -
Saw my oncologist today. Strangely, the radiologist had only read half my scan. She called to ask why, and then pulled up my scan to take a look herself. She said while she's a little concerned that I have some swollen lymph nodes, she still thinks there are a lot of other reasons they could be swollen. My blood work looked great with the exception of a high white cell count. But between the stone and fighting a cold, she kind of expects it to be high. I'm not anemic, which is a very good sign as I had always been anemic before I was treated (really since I was in high school!). So, to hopefully rule it out completely, she is sending me for a PET scan. Only downside to this, I have to pump and dump again, and with this scan, I have to not touch Lochlan for 10 hours. I guess he will be going to grammy and grampa camp for the night.
February 18th -
Scan day. Had to get everything ready for Lochlan to go to my parents. Got over to the scan 20 minutes late. Oops. Oh well - they understood. I was done before he even went down for his morning nap, so when I knew he was asleep, I came home and did some work and got ready to go do some errands. I left when he woke up so he wouldn't see me. I worked the rest of the day, and seemed to make not nearly as much headway as I wanted. I should have just sewed and felt like I accomplished something. Watched "The Butler" - great movie!
February 19th -
Went to pick up Lochlan - he was VERY excited to see me. He had slept the whole night (lucky grammy and grampa!) and had a pretty good morning. Driving was slow to get there as the roads were bad from snow, but I got there. He napped there so he wouldn't fall asleep in the car, and then we headed home just to head out to the doctor's.
Not the results we wanted. The PET scan came back positive. I have uptake in nodes in my neck, chest and abdomen. Not nearly as many as when I was first diagnosed, but definitely enough to be truly concerned. There are still things to rule out, so off to have a biopsy I go. This time they have to go into my neck, as I don't have any convenient armpit ones that showed on the scan. (boo) So it's a new doctor for this biopsy. I see him Friday for a consult, and then the surgery will be next week hopefully.
I talked to her about alternative therapies. She said if that's what I want, then I'm a good candidate. I have a slow growing disease, so it gives me time to be able to do therapies that are slightly slower acting. I have an arsenal of things I'm reading about, so I will wait for the biopsy. In the meantime, I will get my primary care transferred over to the homeopathic doctor that the baby goes to.
February 21st -
Met with the doctor who will be doing my biopsy. I like him. I think we will be a good fit. Still waiting to schedule the date as they have to get everything authorized by insurance, but it will be soon. He's going to try and do it without putting me under so I don't have to dump my milk. I will still be restricted from picking up Lochlan for 48 hours. That is not going to be fun.
February 23rd -
Lochlan is 7 months today. I just am so distracted. I can't focus on anything, and I just want to sleep. I hate cancer.
February 24th -
Trying to get this biopsy scheduled. She asked if there were any days I couldn't do in the next .... 2 MONTHS! I surly hope that this doesn't go that far. That's ridiculous. We'll see what she says when she calls back. Have to get myself switched for primary care. Will have to do a pre-op appointment.
February 28th -
I can't believe February is over. Why hasn't all this been resolved? I have so much to do for Dance For Saoirse and I can't focus. I just wish I could take a time out from testing until .... well never.
March 1st -
I got the baby's cold. This truly sucks. I have to get better before Thursday. I can't put off this biopsy!
March 3rd -
This cold really really sucks! I'm so nervous I won't be better in time. I hope they will do it even if I'm coughing. I don't have a fever, so I think I might be good.
March 4th -
Found out the only way they won't do it is if I have a fever or fluid in my lungs. I have neither. Good to go seems like. It would still be nice if I felt better. I'm so sick of waiting for results of things. I am so annoyed that it has taken so long to get all the testing done. It's been over a month! When the kids are suspected of relapse, their tests are done within a week and results are known. Why do we have to be so patient when we are adults? No wonder people have to do toxic treatments - diagnosis takes so long, the disease has spread before you even know what it is!
March 6th -
Biopsy day. Got out of the house on time. Not drinking and nursing sucks. So thirsty! Fast tracked through prep and intake. I guess he really wanted to get going! Fine by me, less down time (I didn't even get to read any of my book!). They decided to put me under (I think especially because of the coughing) but the anesthesiologist said that I only had to pump and dump once and then I could go back to nursing! No pre-meds - just wheeled me into the OR (I told them I didn't need to be "loopy" to go back there. It doesn't bother me). I remember them starting the propofol and then I woke up in recovery about an hour later. They let me sleep some more in recovery (until about noon) because they know I have a baby at home (honestly, it's probably the best sleep I've had since I was pregnant with Lochlan). They didn't have any results back from biopsy. I found out he took 4 nodes - including the largest one (which turned out to be about 2.5cm not 3). They should have plenty to test from those. I was told that we should know within 48 hours what it is. Now we wait
March 7th -
I was hoping to hear something by the end of the day today. No word. I hate waiting. Maybe it means its nothing. Hodgkin's usually is very obvious (they were 99% sure within an hour after my first biopsy at my original diagnosis). I wonder what this is? Still hoping that maybe it means that its nothing because they can't find anything to "name" it.
March 8th -
Diaper derby and flash mob! I have to remember not to lift things. It's really hard. Especially when your 7 month old just wants to hang on you and climb on you! I hate not being able to pick him up. He's so annoyed with me.
March 10th -
Still waiting. Called the oncologist to see if they knew anything. Nothing is back. I hate waiting.
March 11th -
Got the call from the surgeon today - it's Hodgkin's - Relapse. Dr. Bering called a little later. She will schedule me with a consult at Dana-Farber. This is to prep for possibly needing to do conventional treatment later. I am starting with natural/alternative methods. I have a lot of calls to make. I'm hoping to find someone to coordinate it all and guide me through it. I have some calls to make, but hopefully will find someone in MA not in NH (the one contact I have is up there) and someone who takes insurance. This just really sucks. I feel so bad for Lochlan. He shouldn't have to go through this.
March 12th -
Woke up after the baby slept all night. Went to pee - came back up to nurse him and was in EXCRUCIATING pain! The same spot it was the last time I had the kidney stone, but 10x worse! Mike called my dad and had him come over - I was yelling and swearing and screaming in pain - they called an ambulance. My first ride in an ambulance. I actually asked for pain meds at the ER - this was by far the worst pain I've ever felt. First pain med did nothing. They ordered dilaudid, and a CT. The pain was slowly going away, but not completely. Confirmed - another kidney stone - this one 6mm. There's no way I was passing this one. They tried to have me get up and move to see if I could go home - not happening. I was admitted. First overnight in the hospital for something other than having a baby. I ended up in the pediatric unit because it was the only private room (Mike is a magic talker when it comes to getting private rooms). The nurses were able to get my pain under control and I finally got some sleep. The baby missed me so much and had a rough night at home. Surgery tomorrow.
March 13th -
I didn't pass the stone overnight so the surgery to take it out was still on. They did an x-ray to see where the stone was - it hadn't moved. Mike brought Lochlan to see me in the morning before I had to go down to surgery. I hadn't had pain med for a while so I got to nurse him. He liked that. Went down before noon to get prepped, and saw a bunch of nurses that I had seen last Thursday. Went over all the same stuff - same anesthesia as last week, pump and dump once, will have pain after because of stent put in to keep tubes open after surgery, will have to have stent out next week. At this point they should just say "anything new we need to know? No? Let's do this!" I don't like being a frequent flier in the hospital. They got it out! I asked to see it - it was all jagged and horrible looking. I would not have wanted that to go through! The stent is uncomfortable, but it's better than the stone. Finally got to eat something, and they said I can go home! Lochlan will be pleased.
March 18th -
Stent removal is apparently as painful as having a stone. Not right away, just long enough later to pop up on the ride home and make getting into the house miserable and have me begging for pain meds. They could have warned me about that before I left the office.
March 19th -
Finally got the stitches out of my neck! They were driving me crazy! Got to share a little more of my/our story with the doctor - I should have dropped off cards for the dance-a-thon - maybe he would come :)
I'll keep sharing about my plans for treatment. I meet with a doctor at Dana-Farber tomorrow to see what conventional options exist at this point. My plan is to coordinate my alternative therapies with my home doctors first, and keep Dana-Farber as a last resort.
Thanks for all the support.
Tuesday, January 28, 2014
Scanziety........
I haven't had a CT scan since April 2012. My scan was supposed to be in October, but I was trying to get pregnant, so I opted out (it was a good thing I did, as we found out I was pregnant with Lochlan just weeks later).
When I went to my oncology appointment in September, I wasn't scheduled for a scan, and it was discussed at my appointment, but Lochlan was just a few months old, and exclusively nursing, so I opted to wait so I wouldn't have to pump and dump (and try and get him to take a bottle!).
Now I have scans coming up, and I am just feeling scared. I'm realizing how long it's been and I don't think I'll feel good until I have an update.
I hate that cancer always gets to have it's own way - even when it's gone.
When I went to my oncology appointment in September, I wasn't scheduled for a scan, and it was discussed at my appointment, but Lochlan was just a few months old, and exclusively nursing, so I opted to wait so I wouldn't have to pump and dump (and try and get him to take a bottle!).
Now I have scans coming up, and I am just feeling scared. I'm realizing how long it's been and I don't think I'll feel good until I have an update.
I hate that cancer always gets to have it's own way - even when it's gone.
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