long after the fact..
So.. i really abandoned this blog but in my mind it was not forever.. here i am back and ready to finish the rest of the story with it all in a nice big easy blur behind me!
There was a slightly darker period after my last entry, as i said there was three options with regards to that great scan and the last of the four months of treatment. I said there really wasn’t a bad option but it turned out that one of the options was less welcome that the others at least mentally for me and that was the straw i drew.
So after the next two chemo treatments i had my CT and went as usual to pick up the CDR myself since i didn’t have an appointment about it until the following week. I went over to a friends with a PC (we since discovered a great medical scan reading program for mac but at the time we thought the disks could only be read on a PC) so i had a good look at my scan and resigned myself to the fact that it really didn’t look like it had changed much. I had some nachos and watched some tv with my friend and tried not to think about two more months of chemo. When i had the appointment with my doctor and the nurse he told me that the mass had shrunk a good deal width wise but it was still longer than he would like and since the chemo wasn’t really making me sick he wanted to continue to six months. I hadn’t really considered the length of the mass at all and later when we got the better viewing software i could see what he meant, it had gone from being like a grapefruit to a hot dog kind of. So where i felt i had breezed through the first four months i guess i was a bit more hooked that i realized about leaving it at that.
The next chemo was the worst one and i am pretty convinced that it was because i really didn’t want it. i dropped my brave face and pulled my hat down, jammed my earphones in and stuck my arm out. I felt sick and awful for about a week and then finally snapped out of it.. i had another show to play for CMW and dove into that. i got a wig and really wondered why i waited so long! I still hadn’t shaved my head at that point, still having bangs at the front and the sides and wearing hats but it was not good underneath. I was nervous to take off my hat in front of people of course but found a wig place on Avenue Road and went in one afternoon just to see what it was like. Right away i was put at ease by the amazing nice man who was soft spoken and welcoming and there was a private room where they do the fittings. I made the appointment and got a really cute 60’s kind of bob. It was the first wig i put on and i loved it right away. It was comfortable and maybe the next day we finally shaved what was left of my hair and i keep saying ‘why did i wait so long?’ I think i thought i was going to feel fake or that people could tell but i realize i had nothing to worry about.
So with my new wig and my newly shaved head and playing shows i was definitely in a different place. I breezed through the rest of chemo though i did go again to emergency (in a snowstorm) for antibiotics for another cold. The most emotional thing was at the last chemo. I still can’t really figure out why but it was all i could do to keep it together for the two hours it takes. At fist i requested my favorite nurse and they told me he was on another ward so i couldn’t have him. For some reason this was a crushing blow but i had gifts for him and my other favorite nurse. I found him in the other ward and told him what had happened but he said that was crazy so he sorted it out that i could be with him in this other ward. As usual he was so kind and amazing and almost seemed a bit tense getting the IV line in, letting out a big sigh when he was through he said ‘I do it every day but when you’re doing it for your friends it makes you nervous!’ so sweet.
When i was finally done ‘every last drip’ as my nurse always says, with his arms waving he rallied people and other nurses to come over to the big gold bell you ring when you are finished all your chemo. Again for some reason i was fighting back tears and they didn’t seem to be tears of joy, i can’t think why. Still choking them back i rang that golden bell and gave my nurse a big hug of life.. i tried to put into it all the gratefulness i could and tried to tell him with my watery eyes and no words how much i appreciated him being so amazingly kind through such a vulnerable time for me. I found my other nurse to give her her gift and apologized and marveled at my tears and she said that it is not unusual at all, that people feel like an umbilical chord is being cut and that they are not ready to go. I think it was some of that but i think also i was just very moved by their kindness and would miss them. Maybe i am not too good at moving on or saying goodbyes. Needless to say it didn’t take long before i began to feel more celebratory. My family came over for sushi and we quietly rejoiced.
neutropenia
December 10, 2007
Filed under Uncategorized
Tags: , cancer, health, hodgkin's, low white blood count, lymphoma, neupogen, neutropenia
it sounds like a groovy sixties album title.. it isn’t really.. I found out just before my third treatment that i have it.. i am neutropenic, another thing to be, its having a very low white blood cell count and your white blood cells are your immune system. It is normal for your white blood cell count to drop going through chemotherapy but some people are very sensitive to the chemo and it gets too low. Thats me. Its not a bad thing really there have been studies that suggest that people who are that sensitive have a better success rate with the chemo drugs. So thats fine, the down side is the increased risk of infection and having to take another drug called neupogen and its side effects which normally include sever bone pain (neupogen causes your bone marrow to go into overtime producing more white blood cells, you feel the ache in your bones). The Neupogen has to be injected under the skin for five days following chemo treatments so the after my third treatment where my white blood count was down to 0.1 (but the treatment was fine, calm and alright, i am used to it, just reading magazines with my mum) i went back into the hospital in the morning for a clinic called ‘Look Good, Feel Better’. It was a nice thing, other women in various stages of my position and myself led by some other nice ladies about dealing with the trials of makeup and hair and cancer. I got lots of nice products for free and some good tips, the main being under no circumstances share your makeup with anyone else because of the risk of infection. It was fun sitting around trying out the new products and the makeup tips they suggested. Afterwards a couple of us stayed and talked a little bit about what we were going through. They were all older then me and had breast cancer though one woman had had Hodgkins when she was 26 so it was interesting to talk to her about that but her treatment was completely different. They were strong brave women talking casually about where to get the best fake breasts fitted. I sat rather quietly marveled.
I then headed down to the Lymphoma centre with my first vial of neupogen on an ice pack to get the nurse there to do the injection. I told her i eventually wanted to do it myself so she walked me through getting it out of the vile, switching the needle to a smaller gauge for the injection, getting the air out of the syringe (the best part, you feel so professional!) and the angle of attack. she did it to me though she put it in my arm. No problem. No headaches or bone pain and it continues that way through the 5 days. A lovely nurse came to my house the next day and walked me through the process again though she put it in my leg so i would know what that feels like since it is an easier place for me to do it myself. The next day she supervised while i did it. the worse part was making my hand move forward to stick it in. I said in a frantic voice with the needle poised two inches above my thigh squeezed up with my other hand ‘do i do it now? now? now?’ Calmly she said ‘take a deep breath and then just do it’ i breathed in and plunged my hand forward. Really there is no resistance and no feeling of pain, a little bit slowly squeezing the syringe but not bad at all. I did it, i wanted to go away for the weekend so i needed to be able to do it myself. It was great to have that as a motivator. The next day with friends sitting around i did it calmly and professionally. I have great friends they were fascinated and so supportive. It was a great weekend running around in the snow and eating and talking and no bone pain at all, i would feel the slightest ripple of something in my shoulder or chest but nothing even really to speak about.
Since then i have been having a great time going out, playing bass in a friends band and shopping in kensington market.
Feeling psychedelic and groovy.
e
the one that seems to make it cancer.
I have been rather slow on the updates since there has been little to report this time! definitely a good thing i have felt really very little side effects from the second treatment at all.. none of the achy fluey or shoulder blade pain. This may seem rather indelicate but for anyone going though Chemo i think this is important to tell. My Naturopath advised me that if i could really get on top of the constipation (caused by three out of four of the ‘ABVD’ drugs in the treatment i am on and also the steroids, then the side effects would be less.. i had tried to deal with it with food last time but eventually took the Docusate and the Senna.. this time i took them straight away and ate very carefully and took lots of epsom salt baths (also great for drawing out toxins, 4 cups per bath) and i have felt completely fine. I did have that cold and spent an hour last saturday in emergency to be prescribed some antibiotics. Thought the doctor was reticent about giving them to me the seem to have done the trick apart from a bit of a residual cough that will hopefully go in the next days.
The only thing has been the dreaded hair loss.. i didn’t see any signs of it until tuesday night when i had a bath full of hair and brushes full and pillow cases covered… I dashed out wednesday for some last minute hat shopping and spent a lot of time picking the hairs out of them.
I don’t feel too bad about the hair loss.. its funny you dread it until it happens and then you just deal with it.. having said that i have hardly touched my hair in days! haha (they say only to wash it every three days and use baby shampoo) it looks pretty thin and is a disaster but who can tell under a cute crochet beret (from a dear friend) or beige with swallows on it or a great slightly brimmed knitted chapeau kindly sent over by another great friend who spotted it for me in Top Shop? There is snow on the ground here and thereby it is toque (canadian for knitted hat) season.
Its the side effect that seems to make it unequivocally, visually cancer.
I feel fine.
It grows back.
e
science experiment..
i do feel a bit like an 8th grade science project, all the chemicals running through my body, all the different reactions going on under my skin, all the effects they are having. Chemo drugs first and foremost kill cancer… Hooray! secondly tax the organs; drink dandelion juice, Chemo drugs kill the immune system; drink orange juice eat mushrooms. Bright fluorescent liquid coming out of my nose with this cold didn’t help! i felt like i was playing a gross practical joke on myself like i just figured out how to make something yucky with the chemicals and the bunsen burner. Yellow comes out; put antibiotics in, kills sinus infection side effect kills digestive bacteria put live bacteria yogurt in and try to strike some kind of balance.
chart your progress, make some graphs, write up your conclusions and paste them on bristol board.
1st prize!
e
two days past second
November 15, 2007
Filed under cancer, chemotherapy, hodgkin's, lymphoma, medicine
Tags: cancer, chemotherapy, hogkin's, lymphoma
Wonderful wednesday brought a cute short haircut and seaweed and pickled ginger salad and coffees (herbal tea for me) and feeling great. No blurry vision this time so far and no strange jaw feeling.. interesting.. just fighting this cough and cold still. I had never really thought that short hair would suit me but i am pleasantly surprised! My hairdresser is so amazing she is an artist so it was bound to be good. I came home to beautiful flowers, gerbera daisies in fall colours with bright happy open faces, from rainy england with love. Also an amazing get well soon wish from hugh laurie as Dr House! through and amazing friend in LA i couldn’t believe my eyes! hahah it is a 8×10 of him holding up a prescription pad and one it is written ‘Erin, Get Well Soon, Hugh Laurie’ unbelievable! hahaha..
an all around fun easy day!
e
Second Chemo
November 13, 2007
Filed under Uncategorized
Tags: cancer, chemotherapy, hogkin's, lymphoma
We woke up early for my second chemotherapy treatment, another grey misty morning, another dose of healing medicine. It all went according to plan, my administrative nurse came in to talk to me about the stranger side effects i had experienced but wasn’t overly worried as long as it doesn’t happen again. I was a bit worried about my cold and my white blood counts but it seems that they don’t check those for the second parts of the cycle only the first. I didn’t have a temperature so it was all a go. My nurse was so nice, some comfortable and casual, very experienced, chatting about her kids and her life. She did say that i would lose my hair this week which i am trying to keep from happening with the power of the mind! hahaha.. i didn’t think it would be so soon, they did a study a few years ago and all the people receiving 40 (i cant remember the unit of measurement mg? cc’s?) of Adriamicin all lost all their hair. I receive 39, so we will see. In the meantime i am getting a short cut and on the hunt for some more hats.
I had my lovely lap quilt that i got as a gift this week from my dear friend and his family, his mum belongs to the quilters guild and it is the most beautiful thing, crimson with blue flower patterned patches on one side and patterns of kimonos on the other. My friends mum had looked at my website to see if she could discern my tastes and my website is very quilted (though i faked it by collaging small squares of origami paper together) it is absolutely perfect! and comforting and lucky. It all went very quickly and easily, i had the Dacarbazine pumped slowly again, it does really ache going in to fast for me even in combination with the saline, no problem though just an hour and a bit instead of 45 minutes. It is so much easier when you know what to expect and have done it before, easy peasy. My mum and aunt were with me and they are very entertaining so the time flew by and then a nice day and a lovely evening on the town.
One more dose of healing medicine flowing through me.
Hodgkin’s
October 30, 2007
Filed under cancer, chemotherapy, hodgkin's, lymphoma, medicine
Tags: cancer, cat scan, gallium scan, hodgkin's, lymphoma
I was diagnosed with Hodgkin’s Lymphoma on October 17th 2007. I will keep this blog to help anyone who might be going through the same thing. I have read lots of amazing things on the internet that have been very comforting and i thought i would add to the pool…
I am 28 years old and have stage 2a Hodgkin’s (nodular sclerosis), a mass considered ‘bulky’ in my chest that showed up in a lump above my left collarbone.
So far i have had lymph-node biopsy for the diagnosis, under general anesthesia i had a bone marrow biopsy done as well, i have heard this is not the general practice in north america but supposedly it is well worth it if it is possible, i only had a dull ache for a few days in the back of my hip. The incision in my neck just above my collar bone had some sharp kind of electric nerve pain for about a week when i was stressed or over did it..
I had a cat scan where i had to drink a thick white fake orange and hospital flavored liquid, quite a lot of it the night before and it was a bit hard going but not too bad, the rest the morning of. the cat scan machine is like doughnut that they run you through on a motorized bed table kind of thing, they inject you with a die that made me smell and taste metal and feel a warm feeling around my legs like i had peed (nice) but they had warned me about these it is very common.. haha.. it took about 20 minutes. Eat lots of greens and fiber and drink lots of water after this to stay regular.
Then a Gallium scan where i had an injection of a radioactive fluid, more metallic taste but no problem, i felt a bit hyper afterwards and did a lot of giggling, it was for a scan 3 days later. The scan itself took an hour and a half and in a dim relaxing room you lie on a table and these two big paddles are maneuvered around you as you lie still but breathing normally and swallowing is fine just no major movements.
It comes close to your face but i just closed my eyes and actually fell asleep. The technicians were so sweet and funny we chatted about fashion and loft spaces around the city.
The first appointment with my doctor was great, the administrative nurse is so sweet and nice and reassuring and my doctor is amazing, confident and attentive and interested.
It has all gone very quickly and comfortingly easily, everyone is so nice and i feel physically fine so other than these scans and appointments everything goes on as normal.
e
First Day of Chemo
October 30, 2007
Filed under cancer, chemotherapy, hodgkin's, lymphoma, medicine
Tags: cancer, chemotherapy, hogkin's, lymphoma
It was still dark when i woke up to the street noise and the radio at 7am. We were in the hospital by 8:30 in a full waiting room and contemplating the number twelve i had been handed. i scanned the full baskets of cancer community knitting projects in various stages of finished, i am not brave enough with my rookie skills of a knitter to contribute as yet but i expect with the growing waiting room time flowering in my life this will soon change.
It was not long before they called me and i was led to a ward, a big armchair with an iv machine to its right.. it reclined and i soon had my feet up and an electric blanket around my right hand and wrist (i asked for the left but was told by my tall male nurse with a slow deep calming voice that the veins are better in my right). across from me were beds with other patients and beside me other chairs like mine. They administered anti nausea medicine and then i had to wait for my meds.
We had been told and had read on the internet that the first treatment would be 6 hours because they put the medicines in very slowly to better monitor for reactions, this makes sense and probably happens in some cases but it turned out not to be true for me. the first two were pushed through the IV put in the vein on the left side of my right wrist with nothing more than a sharp pinch, two sizable syringes, the first was bright red (Adriamycin) and my nurse pushed it very slowly, it felt fine and my vein didn’t go red as i had read that it might, then next was clear (Bleomycin) and other than cold and had a metallic taste i am getting used to (cat scan injection and gallium injection had this flavor) it was fine. The following two were dripped, Vinblastine over about 15 minutes and then Dacarbazine over about an hour. Vinblastine was fine and Dacarbezine was a bit uncomfortable at first but my nurse told me that with his method it shouldn’t hurt. It did hurt at first, an achy through my forearm so he turned it off for a few minutes until it stopped. He said he really wanted my first treatment to go well and for me to feel fine about it because in the future i will look back and always remember the first one, and if it was painful it would colour the whole treatment. Very nice. So he began the drip again and though there was a slight ache it was tolerable and i felt fine about it.
I watched the man in the bed across from me reading a thick book about canaries in which he had many place holders, he had a lovely smile and chatted easily to his companion and his nurse.
I unplugged my rolling IV machine and maneuvered over to the bathroom where my urine was red from the first drug (i had been warned) and smelled like chemicals. I was told to drink a lot of liquids today to help my kidneys deal with all the chemicals. (i am sipping decaf green tea and water)
Then it was over, my nurse took out the IV as i chatted to him about his nursing background and the upcoming winter, he bandaged it up but said i could take it off in half an hour if there was no bleeding but it had already stopped right after he took out the needle. no lifting anything with that hand for 2 hours.
I wandered out of the ward and everyone smiles at everyone else with support and empathy. I felt a little woozy and tired as we made our war to my favorite diner but not bad. I wasn’t hungry at all but ate easily. halfway through my right hand began to swell up but just a bit and went down quickly. My left hand had the feeling of having been very cold and then quickly warmed, this is the side effect i most worry for being a musician but this went away quickly too. Now i feel a bit tired but it could be more due to the past hectic days and not enough sleep than the treatment.
All in all it took about 2 and a half hours and was fine.. It is much nicer to know what to expect from the treatments and for it to not be a mystery.
Now two weeks of relaxing and brushing up on my knitting until next time!
e
Erin's Hodgkin's Blog 