I wait for you to start speaking, stare at you for something remarkable to come out of your mouth as I sit there hooked up to the pinkish liquid. But then I realize I had already heard the most remarkable thing: the cancer cells in my body have become so smart that they have taught themselves to pump chemo out of them. They have survived, against my will, against all the chemo, against all the tears and the pain, and the lost pounds, they have grown. We have sent poison into them for nine months now. It is really hard to believe its like being swept into a horrible time warp where your life is no longer your own but belongs to some time-space continuum that has you trapped. And I have been trying so hard to find the right access code to escape– but there are so many combinations.
I watch the people in the transfusion room come and go. The older ones look at me like I am lost, that I don’t belong there. The younger ones with understanding and acknowledgment of this same battle playing out every day they wake up and say, “I am going to fight cancer today.” Even though other mornings its easier to stay in bed now, the march to law school finals weeks incessant my lap top comes to bed easily.
I ask Cory, my nurse the names of the new drugs again, I have hardly heard much from the doctor after the revelation about these damn smart cancer cells, it figures, these cells go to law school after all: vinorelbine: an IV push, doxil an hour IV drip, gemcitabine a half an hour IV drip. The combination is more gentle than the ICE, but has proven to be effective in cases where the hodgkins has become non-responsive to other chemos.
I go to class after chemo. I am feeling pretty good, considering. Tired, and hot flashes but that’s nothing new. My classes go late @ 8PM, our professor lets us out and tells us he’d like to take us all for a drink at the pub. I want to thank him for being so great this semester, he told the best stories, and I really enjoyed the lectures but need to get to bed. I go up to him to explain the situation, and he asks me to stay after a moment. The class trickles out of the room, to head to the pub. He looks at me and tells me he’d love to write me a recommendation or doing anything to help me out because I have incredible work ethic. He says he cannot get people who have a cold to come to class and I come after chemotherapy. I cannot find words to expression my thanks, instead my eyes well up and I whisper thank you. This day has been more emotionally overwhelming that I can take. But I am going to be okay.
1 comment December 2, 2009
So the results came to me Wednesday @ 3:10PM. I have to be in class @ 3:30 for a final presentation, which I was already apprehensive about because since Thanksgiving was the next day I knew class attendance would be sparse.
So my doctors calls me to give me to results. I had already called the office three times that week just to check, because the unknowing is torture. Turns out I was wrong. At least when I am in the uncertain phase I can still have this optimistic hope that it was infection and that this would all be over with so soon. Turns out it wasn’t all infection, it’s still hodgkins. so the doc thinks its time to move on to another chemo to see if the disease will still respond to treatment. The new chemo is apparently more gentle than the ICE and only take two hours instead of 24. So I start the new chemo on Tuesday Dec 1st.
so biopsy number three starts to heal, and we move on to the third chemo and hope thirds time the charm.
1 comment November 29, 2009
So. The PET scan was inconclusive. My stupid biopsy site that never closed, lit up like a christmas tree on the thing. The problem is that the site is infected so infection shows up same as cancer on the scans. SO the doctors don’t know if its still hodgkins or if its just infection. There was also a spot of activity in my chest that wasn’t there before but they again don’t know if that’s due to infection since I’ve had the sniffles, and the shingles, and anything else that has chosen to find its way to my weakened immune system.
bah. so where does this take us? Oh yes.. time for biopsy number 3. They are going back into the site and going to try to take the whole thing out this time and see what it is. I go under on Wed. Nov 11. Results take 2-3 days, so maybe the following Monday we’ll know what’s up.
I am hoping with everything that this is just infection. I mean the damn thing has been draining since AUGUST. MY body certainly is having a hard time healing b/c of the chemo but also being diabetic is a factor in my ability to heal.. so please let’s all hope that its a massive infection we can take care of with antibiotics and time, and not hodgkins.
I need your positive vibes. My spirit is really tired and scared. November makes it 9 months of this battle. 9 months. It seems unreal. Like someone else has taken over former Erin and made her a ball of anxiety and breath holding. I am gearing up to continue the fight, and hoping my sea-legs will hold me.
2 comments November 6, 2009
Let me sum up the past several months as being a weird process of symptoms and chemo. The ICE chemo is awful. I mean this stuff is so toxic. Even thinking about it now and this ridiculously huge glass bottle the 24-hour infusion comes in makes my stomach turn.
The road has been bumpy. ICE has given me lots of side effects. Lots of vomiting and not wanting to eat. Lots of drops in my counts. My whole life revolves around my CBC and Type and Screen. These are the two blood tests I have over and over again. CBC = complete blood count and the Type and Screen to match what blood I’ll need. I’ve had 3 platelet transfusions, I think something like 5 blood transfusions now. My body has been struggling to make the red blood cells and I’ve been anemic over and over, which means tired and worn out. The last big drop ended up with me having black dots in my vision, my platelet count had dropped so slow the bleeds in my eyes couldn’t be plugged up. This came at an extreme in opportune time, when Sam and I were supposed to go away for the weekend. Cancer has taught me to be flexible. Roll with the punches so-to-speak.
Anyways, its been a series of trouble shooting symptoms, fevers, blood, infections, and postponing chemo so having it a month apart. The ICE has beat my body up, that’s how my doctor put it. That my body is tired and abused. But I am still surviving! Still doing law school, still running the Women’s law group still refuse to lie down and give cancer the upper hand. Screw that.
I have now made it through 4 cycles of the ICE. So I am now approaching the BIG PET SCAN. This scan will show what’s going on inside, how much of the cancer has been killed by the treatment and how to move forward. My doctors are being really positive about the results, I am being cautious. I keep thinking about how my other PET scans in the beginning (May?!) were showing progress and then BAM my body just stop responding to treatment. Its hard to learn how to trust your own body when its tricked you time and time again. I want to feel this positivity but I don’t want to be let down by my body again. What a bizarre thing to have this relationship with your own body.
So after the PET scan we’ll have a good picture of what my treatment will look like going forward, if I’ll move towards stem cell transplant (if my PET scan is clean, meaning no cancer) or do more Chemo and maybe a different kind to keep fighting it. The road has felt very long.
1 comment October 30, 2009
Sorry for the long hiatus again. I’m sure you can imagine I have been busy with law school and cancer that sometimes finding the emotional time to write about cancer just doesn’t happen.
Law school is going well. The 12 credits are manageable and my professors are so understanding and accommodating, it’s been such a positive experience being at VLS and in small tight-knit community. I have been talking a lot with other law students about how trivial law school has become in this whole “process.” As law students I think its ingrained in us that law school is to be our life and who we are for three years. But what cancer has taught me is how insignificant this moment in time is compared to one’s own life. Its def. allowed me to reevaluate my priorities and take the whole law school experience with a grain of salt- it is not the be all end all, it’s just part of my life a vehicle to get me to the next journey.
Things on the cancer front have been nuts. I have now gone through a stem cell collection. This was such a draining process. I have to drive down to Dartmouth everyday and have blood work done and then wait there for two hour to see if my blood counts were right to collect that day. It took three days for my blood counts to right themselves and a lot of shots of a white blood cell stimulator to make my stem cells release from my bone marrow and float around my blood. After three days of driving down to Dartmouth they finally could collect.
Collecting stems cells, means you are hooked up to this huge machine that takes all your blood out swirls it around in this big machine and the stem cells float to the top and get skimmed off while the rest of your blood gets put back in you. I had to have a temporary line put in my neck to do this collect because my veins were not big enough to do it. The whole process took about 5 hours mostly I was lying in a bed writing a paper, but I tried to rest to. Also I had amazing nurses as I have had in this whole process, really the folks at Dartmouth are top notch caring amazing people. My nurse talked me through teh whole process and explained in human non-medical terms each stage it was nice to have a real understanding about what was going on. She also brought me lots of junk food snack which was nice! teehee.
After the stem cell collection my calcium was low, which makes your lips and finger tingle. This can be corrected by consuming calcium so I drank lots of milk and ate cheese all night. I also felt incredibly drained, like I had been hiking all day or something which was strange because I was just in a bed all day.
Once the stem cell collect is done, the lab at Dartmouth takes the bag of stem cells collected and has to go through a counting process. For my transplant they needed to collect 3 million cells. I was told that probably this process would take two days. The collect I had took 5 hours like I said and we got started late in the day because I had low platelets and needed a platelet transfusion before they could collect. So this meant that the collect of stem cells didn’t end until 4PM in the afternoon. There was a big debate whether the lab people could stay late and count my collection or wait until the next day. If they waited until the next day, this meant I would have to go back to Dartmouth and start collecting without knowing how many we got the first day. Luckily for me, the lab people stayed late and that evening I got the phone call that they collect 5 MILLION!! So I was all done I didn’t have to be hooked back up. This was such great news.
So now my stem cells are frozen until I get a clean PET scan (meaning the cancer is gone) and then they’ll do the second part of the transplant which involves ridiculous amounts of chemo and a 3 week hospital stay in which I have no immune system (literally) and have to be in a sterile environment. But that’s another chapter.
I’ll write more this weekend about the past months of mishaps and things! As always thank you for the endless support and strength you all give me.
Add a comment October 2, 2009
Hi all. So we (my mom, Sam, and I) met with the new doctor here at Dartmouth yesterday to go over the biopsy results.
Let me just say its been a crazy couple of weeks. Since this new lump (or rather old lump in the same “super clavicular” area) came back and on July 17th the doctors in Maine were concerned I have been on edge, completely absent-minded and have been very bad at keeping in touch so I apologize to anyone who was ignored during these past weeks.
So on July 17, they told me in Maine at EMMC that the disease could be back and not responding so they wanted to stop chemo and get a better look. They ordered a CT scan which showed the mass in my chest was bigger than it was in May, but only size and not what the substance of it was. Meanwhile they schedule to have a PET scan for the following THURSDAY… booo I had to wait a whole week to learn what the heck was growing on.
Well in the meantime I called my doctor down in Dartmouth to let her know what was going on and told her my concerns. She talked to me about how its really important to feel confident about your cancer care and that’s when I said, TAKE ME BACK! She was able to schedule me a PET scan for the following Monday (which meant waiting a couple more day) but she would be able to deliver the results asap.
During all this the lump was growing angry looking and bigger, it became red and hot. I was put on an antibiotic to take care of a possible infection (the blood work showed a jump in my counts) O also- the PET machine at EMMC BROKE TWICE and my scan would have been pushed back anyway (I’d like to note that this was the SECOND time the PET at EMMC broke when I was supposed to have a scan)
Ok. so a drive down 95, across 101, up 89 and back to VT.
I finally get PET scan results, the mass on my neck breaks open and starts seeping and they schedule me in for a biopsy.
phew. The biopsy went well, a couple stitches but the site looks so much better than before.
So YESTERDAY we met with a new doctor here who was great. He came in the room after getting the biopsy results and said “well i have some good news” this was the first time we have heard this from a doctor in 6 months. The mass is a lot of necrotic tissue (dead tumor tissue) that probably got infected while I was sick and that’s been stirring up trouble. The cancer is still hodgkins, and they have found a couple new areas with activity. But all in all this is good news, the cancer has not spread anywhere else, its just being a pain in the butt to get rid of.
This brings me to today. Currently I am sitting in the Dartmouth Cancer Center infusion room startingy my new more aggressive chemo! It’s called ICE.. yup, how fun is that? So I am going to be on ICE which consists of a half of a day in the infusion room, then I go home, then I come back tomorrow morning and get to be hooked up to chemo for 24 hours, so I’ll be bunking at Dartmouth tomorrow night. woot.
The new plan is to do this ICE for several months until they can get healthy stronger stem cells from me and take them out, then they hit me with more chemo and get the cancer really low then poof put the healthy cells back in and they triumph over the cancer. Sounds pretty cool. So its still a bit of a road ahead but I am feeling positive and strong still and ready to kick butt.
1 comment August 4, 2009
The news is that I am back in Vermont, and going to Dartmouth. The PET scan at Dartmouth showed that the damn tumor that started this whole ordeal is still there and a bit bigger. So I had a biopsy last Thursday to check and see what the cancer is doing. I will know a lot more this week and will update. Still planning on kicking these dumb cancer cells in the butt.
Add a comment August 3, 2009
I haven’t written in forever, and I apologize for the lack of updates. Its been miserable weather all summer in Maine, and pretty much I’ve been working, watching jeopardy, and sleeping. Nothing too exciting. Treatments have been going all right– I had been having good results with my blood wok, the PET scan in May showed that things were shrinking substantially, I had been bouncing back from treatment in one-two days… smooth sailing it felt like..
But now everything’s on hold. I have another lump. Its in the same place as the first, smaller than it was in Feb. but bigger than it was in May. I went in for chemo on Friday and the doc saw it and said we couldn’t continue chemo until we know what it is. So I went in for a CT scan, but the scan was inconclusive… so now I am playing the waiting game again. I have to have another PET scan at the end of the week and by Friday hopefully we’ll know more.
Needless to say this news is frustrating two months from being done and now this. I am staying positive of course, we are not certain what this is… It did start showing itself around the time I started getting this cold this summer so who knows it could be related to that, but its hard to speculate not really knowing.
I’ll update again when I know more. But for now send positive healing thoughts my way! I know that I’ll beat this darn thing eventually, it just looks like it might take some more time than I thought.
2 comments July 19, 2009
Well.. I’ve completed three cycles, three months of chemo. My latest PET scan says that there has been a substantial change in the cancer masses in my body, but they are still there. Ideally, we’d like to have a negative PET scan and then I’d just finished up two more months of chemo. Right now I am going to go ahead and do my 4th cycle, and have another PET scan done, and hopefully if that is negative I’ll only have tw more months and no radiation!! But its a waiting game to see what will happen.
Things seem to be going well. I am slowly bouncing back from yesterday’s treatment, although it was a rough one. Things at the Bangor clinic are different than Dartmouth. They don’t give my the steriod (to help accelerate the anti-nausea med) by I.V. so they had me taking it orally, which was really screwing up my blood sugars, so they took me off the steriod all together but its definately noticeable in how the anti-nausea works.. I don’t feel as great as I did previously. But I went to work today and made it through the whole day, and even had some lunch so I am feeling happy about that. I really don’t want to have to miss too much work for stuipd cancer.
I am definately feeling tired of the whole chemo routine. I am feeling better, and just want the cancer out of my body and have my “normal” life and control over my body back. But I suppose this is natural and comes with the territory. Its frustrating as well because summer is here and I want to have a lot of energy to go have fun and be outside doing things, but I dont always feel like it and I get tired easily. But I suppose its also lucky that I don’t have to put up with all of this at school and trying to forge through late nights of reading and studying. Anyways, trying to remain optomistic and hopeful. I know I’ll get through this, its just going to take more paitence, hope and strength!
2 comments June 3, 2009
Well I made the journey back to Bangor. It’s been a change of pace since leaving Vermont. Its still bizarre getting up and not being in my tiny little law school town. I actually can say I am going to run to the grocery store and have it take less than 1/2 an hour. Pretty exciting.
On the HL front things are still progressing forward. I had my first treatment here in Bangor. This was an adjustment. I got so used to the drill and schedule at Dartmouth and seeing the same faces, that it was hard to switch treatment up here. I cannot really compare the two places because they are sooo different. But switching places of cancer care is not something I’d recommend to anyone if they don’t have to do it. What a pain in the butt. My pre-meds weren’t the same here. And I was given the meds I usually get by IV as oral drugs to take when I went home. This in turn made a mess of my blood sugars ( I am an auto-immune wonder…. for real, I need a t-shirt or something).
Anyway treatment went okay. Just feeling super tired but trying to push through since these are my last few days before I become an intern for the rest of the summer! I am looking forward to getting back to a structured day, but I do love lounging in my PJs until late morning. I am worried about my stamina and being able to work esp. after chemo treatments but I guess I can only try to do it and see how it goes.
I do have my next PET scan this week! I am excited to see this, considering my last PET scan was full of dark scary masses where there shouldn’t have been anything. I really do feel as though I am healthier than I was say in ooo March, but still its hard to tell when I am tired and sick to my stomach to know the juice is serving its purpose. I have been eating lots of ginger at the recommendation of friends and the latest chemo buzz, and it seems to be helping, which is promising since I do love ginger.
Overall, I feel pretty strong and proud. I made it through the rest of my semester of law school, and am beating cancer, and still waking up each morning ready for the day. It’s not an easy path, but it’s mine and I suppose I am making the best of it.
Add a comment May 22, 2009