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.
