Wednesday, December 30, 2009

The Day After..

I'm not going to lie, the night was rough. I was a sweaty and cold mess thanks to the Bleomycin and on top of that I had to use the toilet about a dozen times due to all the glucose water and the fluids I'm supposed to drink. I am expected to drink about 3-4 litres of clear fluid a day to help flush all of the toxic junk out of my body. This morning I woke up with dry heaves, heartburn (a common side effect of this cocktail) and a splitting headache that has lasted all day (I finally got a hold of someone from the clinic and they explained I could indeed take Tylenol in this situation...better to find out late than never I guess). The queasiness has subsided and I am just about to have some soup and more apple juice and water. I am doing alright. Actually, I am also supposed to take my anti-nauseant in an hour so I should just get better and better. I am trying to catnap today as I slept so poorly the last few nights. My hand is less swollen and sore today as well (where they tried to get the iv in). All in all, I can feel myself slowly starting to perk up and feel like a human.

A note on the port. I am happy to be getting it given the stress of yesterday's iv insertion. It's just a bit tough to think about another surgery right now, putting more stuff in my body (this time anaesthetic and more pain meds), and giving up another day with my kids. I know it's the right decision but it also is a bit creepy how it works (creepy but cool). Basically they make an incision in your chest, just above your heart and place the port under the skin. Then they take a catheter and insert it into a vein in your chest, with the tip of the catheter sitting at a point just about the heart. Once the incision is healed, all I'll notice is a small bump under my skin. Then when I go for treatment, they will access the port by sticking a small needle into the port through my skin. All I should feel is the pricking of the needle going in and then voila, access!
Benefits of having the port: another groovy scar to match my neck scar, no more oopsies by the nurses, ability to lift over 10lbs (whereas with a PICC you are unable to do so) and no dangly plastic lines for the kids to pull at (PICC). Negatives: having to have surgery to get it and having to have surgery to remove it.

Well just found out we are having company in like 20 minutes ('tis the season), and I'm sure I'd look and feel a lot better with a shower!

Tuesday, December 29, 2009

1 down 11 to go!

I haven't had much to say lately about the cancer. Really, what could I say? However the anticipation of the last few days has been a bit rough...last night ('twas the night before chemo) was short and was not restful. The build-up to chemo today was also unpleasant with me at times thinking I was going to be sick....and I hadn't even made it to my treatment yet!
So we arrived at the Tom Baker at 3pm this afternoon for my first treatment. I was feeling very nervous, anxious, and sad and was definitely not the superhero I had intended to be. Nevertheless I got assigned Bed 5 and tried to get comfortable while waiting for my nurse by making nervous jokes and bundling up with warm blankies. My poor nurse today had to be the one to discover that my veins are absolute crap. So crappy that after 2 tries (in 2 different places on my right hand)she gave up and called another nurse in. Now, let me clarify, it's not that they couldn't get the IV in, it's that they couldn't get the pump to even go because the veins were just too small to get the fluid in. Not a good way to start. So they took my left arm and put in running hot water to try to encourage the veins out. Then they used the blood pressure machine to bring some extra pressure. Finally they found a good vein on the inside of my left arm just below my elbow. Success at last! However, I am now scheduled for a cath-a-port (port)to be surgically installed next week - yay, more surgery. Anyhoo, we got the iv in and got started on Kytrel (anti-nauseant). This was 15 minutes and not a big deal at all. Next the nurse came and injected me with the A and the B drugs. They were fine. Then I got a small bag of V. Also fine. Then they hooked me up with big Daddy D. 10 minutes in I started to not feel well. My colour drained out of me and I felt a pressure on my chest which was just strange. It wasn't super uncomfortable but I really did feel a weirdness which is hard to explain. Near the end (about an hour of drip)I started aching at the injection site and was so glad when the D was done, the line was flushed, and I could go to the washroom and then head home. I helped put the girls to bed when we got home, and then ate a big meal of shortribs and mashed potatoes. Clearly my appetite has not yet been affected (even though my mouth does taste odd). Anyhow, more information on the port and stuff later. Oh yes, and my doctor actually came and saw me today (I think because we said that we'd not talked to the doctor since my definitive diagnosis) and signed off on the port for me. I'm feeling like I'm not making sense anymore and it's time to crawl into bed. Sure hope the night continues to go smoothly. Thank you again for all of your letters, phone calls, emails, packages, and positive thoughts.

Monday, December 21, 2009

90% vs 10%

A quick note about survival rates and people fighting cancer (me). Intellectually I can read and digest that the "cure" rate of Stage II Hodgkin's Lymphoma is 90%. I can also intellectually infer that my possibility of cure should be even higher as I am young, fit, and positive with a good support system. However, 10% is FREAKIN' HUGE as a death rate when YOU are the one who has cancer. Just sayin'.

I am not knockin' the people who have tried to encourage me with statistics and stories. They are helpful and often inspiring. Please understand though, that once in a while I feel sad and worried and scared. I think I'm entitled to have these feelings...hopefully not more than 10% of the time.

Wrapping My Head Around the Information

So this is a day later than I expected but I've really needed the time to digest all of the information we've been given on my treatment. As I stated on Friday, we have no further information on the diagnosis (no PET scan results as of yet, probably tomorrow) however that will not change the treatment which I will be given (ah such a gift!). So, this blog entry will discuss the treatment, the side effects, and the immune issues I will be dealing with for the next 6 months or so. I apologize in advance, but it's a little difficult to remain upbeat while talking about what's going to happen to me.
I previously had mentioned ABVD therapy in an earlier blog. This is indeed the regimen we'll be following for treatment. My treatment, I believe, will go something like this: the Friday prior to treatment I will go to the Cancer Centre (aka Tom Baker) and do my labs and then meet with my nurse, S, and/or hemaetologist. They will asses whether I can do chemo and if I am given the green light, I will have chemo administered on Monday morning (Day 1). Chemo will be given intravenously and will start with an anti-nauseant. Next will come "A" (Adriamycin) which is bright red in colour. If the needle is incorrectly placed and the drug seeps out at all into your system it will give a nasty chemical burn to your skin. Additionally, it makes you pee red (that ain't nearly so bad!). Other side effects include: nausea and vomiting, lowered white blood cell counts, lowered platelet counts, hair loss, mouth sores, and pain, redness, swelling, itching or irritation at the injection site. Long term effects are possible heart problems. You can only take so much of this drug over a lifetime (thank goodness!!). "B" (Bleomycin) is yellow (no idea why the colour is important but it does make me think of a rainbow going into my body) and is the next drug administered to me via iv. It's side effects are flu-like symptoms (fever, chills, sweating), skin and nail changes, hair loss, mouth sores, coughing, and shortness of breath. Long term there is a risk for some patients to develop lung problems, and again, there is a limit as to how much you can have over a lifetime. "V" (Vinblastine) seems to be the mildest of the four and is administered following "B". It's side effects include lowered white blood cell counts, lowered platelet counts, pain and irritation around the injection site, and nausea and vomiting (apparently mild....hahaha). The last iv drug is "D" (Dacarbazine). This drug is administered after "V" and is administered with an additional line of glucose water at the same time. This is to avoid it's nasty side effect of muscle and joint aches and lock jaw. Yeehaw! Other wonderful side effects include (but are not limited to): nausea and vomiting (a popular side effect), lowered white blood cell counts, lowered platelet counts, pain and irritation around the injection site, flu-like symptoms, decreased appetite (ya think?!), altered taste, and weight loss. This whole treatment takes 2-3 hours and then you go home and take more anti-nauseant medication for a few days. Wait 13 days and repeat treatment. Two treatments make up a cycle and I am slated for 6 cycles.
You may have noticed that white blood cells and platelet counts get pounded by these drugs. I suppose being a cancer of the lymphatic system that it makes sense. Unfortunately it means I have to be incredibly sensitive to my immune system and keep myself from getting an infection. To put it into perspective here are a few more pieces of information I was given about my immune system. They told me that between days 7 and 10 of my treatment cycle my white blood cell counts will be at their lowest. They told me to avoid crowds and to institute a strict hand washing policy in my house for household and guests. Additionally, with my white blood cell counts being as low as they'll be, my body won't be able to produce the warning signs of infection namely mucous and phlegm. Because of this, I will have to be aware of my body and if I get a sustained fever of 38 C (normal body temp is 37) for 4 hours, I need to phone the Cancer Centre for instructions for care and if it hits 38.5C I need to hit the road and get to the emergency room and give them a sheet which contains specific instructions (specific blood tests and if my neutrophils are low, broad spectrum antibiotics, isolation, and chest xrays) for the ER from my Hemaetologist/Oncologist. Neutrophil....the most important microbe-eating cell in the blood as it is the main cell which comats infection. Anyhoo.....

Friday, December 18, 2009

A Very Quick Update

This is going to be a very brief update as I've had a very long day and need to get to bed asap. I will follow up with a more detailed entry on Sunday sometime.
My husband and I had our "big" appointment at the Tom Baker this morning. I actually found out yesterday (from the surgeon who performed the biopsy) that I have Nodular Sclerosing Hodgkin's Lymphoma which is also called "Classic" Hodgkin's. This is a relief as it is the most common form and most treatable. He also told me that the hard lump I am now feeling on my neck is likely a hematoma - basically old blood from the procedure which has pooled up under my skin - and will take 2-3 weeks to dissipate (euuuwwww). So today we were hoping to have the results of the PET scan as well but they were not in yet...should be early next week. Regardless, they have given me a treatment plan of 6 cycles of ABVD therapy which should be roughly 6 months of treatment (1 cycle is 2 treatments). Basically I will show up on a Friday, get my labs done and meet with the nurse/doctor and then on the following Monday I will have my chemo administered over a 2-3 hour period. After 14 days, you do it all again. More details on that later. We found out lots of interesting and somewhat scary information regarding the different chemicals and their side effects and also had a lengthy discussion regarding my immune system and infections. After all that talk we had a very brief tour of the chemo "lounges" and then we headed home. Oh yeah, and I got a prescription for a wig. Hmmm. Not exactly the "feel good" appointment I would have liked but sometimes you just need to hear the truth. I will write more on Sunday about the actual treatment and its administration, checkpoints, prognosis, etcetera. Now I need to pack my overnight bag for our trip to Banff tomorrow.
OH and last, we decided to defer my start date for treatment until the 29th of December so I can be ensured an "easy" Christmas; I didn't want to lose my appetite for turkey and the trimmings!

Wednesday, December 16, 2009

PET Scan Day

This morning I had my very first PET scan. For those of you not in the know, it stands for Positron Emission Tomography, and is the ultimate scan you can get for diagnosing cancer (among other things). It basically gives the doctors an idea of the level and areas of abnormal cell activity in your body by providing a coloured picture of your innards. The unfortunate part is having to get shot up with the "mildly" radioactive sugar which is what reveals the metabolic activity of your tissues. Hopefully I'll have some results when I meet with my Hemaetologist/Oncologist on Friday morning. Anyway, the tech who did my scan told me that I needed to avoid "handling" my kidlets for the rest of the day today although a goodnight kiss at bedtime was acceptable. I am also supposed to be drinking tons of water and flushing my system....the excitement never seems to end!
I want to thank everyone for the hopeful comments and wit -for some reason I've been unsuccessful in posting comments for my own blog....I'll keep trying though! I look forward to having a boatload of information after my meeting on Friday morning, including my full diagnosis and treatment plan. Until then.....

Monday, December 14, 2009

Things are looking up, even if they are a bit frosty!

It's Monday. I don't like Mondays and I didn't get a lot of sleep last night (3.5 decided that ONLY Mommy would do at 2am). But today is a different Monday. Today I don't feel sad or scared. Today I feel annoyed about my diagnosis but that's all it is, an annoyance. It's a small part of my life that is wreaking havoc, but it's not life or death. It's just, annoying. Losing my hair would be annoying. Potentially getting sick to get better is annoying. Having to cancel my winter travel plans (especially when it's -28C outside) is very annoying! Annoying however, is not going to kill me. I've been plenty annoyed before. I don't have time in my life to be sick. I want to take my kids places, work-out with my trainer, attend hockey games, and go on dates with my husband. So cancer will have to take a backseat in my life. I will buckle it in, take it around with me, and make sure it gets treated properly, but it's not going to ride beside me and it's not going to become me. Forget it.

This week's list of things to do:
Monday - photos with Santa for the girls (check!), 3.5's dance class
Tuesday - 3.5 pre-school, groceries, seasonal flu vaccinations for everyone
Wednesday - PET scan, wrapping presents and staying away from the kids while radioactive
Thursday - 3.5 pre-school Christmas concert, FREE time!!!, hockey game
Friday - Tom Baker appointment

Of course there is still some Christmas stuff to do so must get on that as well. Here's hoping the energy lasts!

Saturday, December 12, 2009

My first cancer souvenir and news from the Tom Baker!

The wound is healing and only one more day without lifting the little ones. The steri-strips will come off on their own in a week or so and we'll see what kind of mark I'm left with.
Yesterday I heard from my nurse at the Tom Baker. We discussed my upcoming PET scan and she told me that my hemaetologist agreed that the surgery should not be an impediment to my getting my PET next week as they are mostly interested in seeing the level of activity in my system and also my pelvis, they already know about my neck and chest "issues". So it's off to the hospital on Wednesday morning (thank you to the kind lady in Nuclear Medicine who changed my appointment from 1:45pm to 8:30am - I would have STARVED!) for the coveted PET scan. I plan to hole myself up in my bedroom for the rest of the day as I will be a bit radioactive from what I understand.
The other news I had from the nurse was that I will be having my diagnosis and treatment discussion/appointment on Friday the 18th. Additionally, she expected that I would have my first chemo treatment on Monday the 21st. I think I'm still digesting that last tidbit. It's hard to know what to believe right now as we've gone from expecting chemo in January to before Christmas to between Christmas and New Year's and now back to before Christmas. Sigh. I'm not going to believe it until I hear it on Friday. Meanwhile, I am scurrying to get the rest of my Christmas business done. House decorating is almost complete, present wrapping almost done, and a wee bit of shopping is left to do. Thankfully, the weather is supposed to warm up A LOT next week and we can all get some fresh air and vitamin D.
Mom went home this morning but both she and my Dad will be back next Friday for the Christmas holidays. I am starting to feel a little more Christmas-y and a little more "bright" about things. Thank you for all of your well wishes and support, it does help lift my spirits and remind me that I am not an island.

Thursday, December 10, 2009

Things are moving along here, what a pain in the neck!

Here I lie, all bundled up in my bed Mom tucked me in you know! It's been a long day and I've got almost an hour before I can take my next Tylenol 3 and go to bed so it's time to dash off a quick entry.

Tuesday I heard from the surgeon's office and he booked me for Thursday afternoon for minor surgery (haha, minor). I finally heard from the Tom Baker and they said that even though the surgery would be only 6 days before the PET scan that I should go ahead with it anyway (there is supposed to be 10 days between and surgery and the PET scan so the surgery doesn't interfere with the results of the PET). I guess they figure that we already know that something is wrong with my neck so really our concern is related to my lower back/sciatic "arthritis" pain and also to help with staging the disease. I had a good day on Tuesday! I felt like finally we were getting somewhere, leading us to a final diagnosis, and then to a treatment plan.

Wednesday I shopped my brains out as I have fears of not finishing everything I need to do before Christmas. I am happy to say that I'm mostly done my shopping now, but of course there remains a few last things to pick up. While at the mall my family doctor called with the results of my CT scan. Basically everything looks pretty much as expected, nothing in my lower body (yay!) and some multiple nodes (soft tumours) in my chest and neck. Additionally on Wednesday, my parents have allowed us to book a mini holiday to Banff for a night on the weekend of the 19th. I'm really happy to have the chance to spend some time with my husband who, by the end of my day, gets very little of the good in me these days.

This afternoon I had the surgical biopsy. It was booked at the minor surgery clinic at Foothills. When I got into the unit, the nurse took one look at me and asked "are you driving this afternoon", and I said, "no, I have my husband with me in the waiting room", and she said, "you look like you could use something to help relax you", to which I said "I think that would be nice!". I'm not sure the Ativan helped all that much, or perhaps it did and I really would have been a basket case in that operating room. I was nervous to begin with because ok, it's surgery, and my emotions are bit all over the place right now as well. But, I also knew that the node was in a tricky spot. The surgeon was very friendly and kind but still....local anaesthetic! So he froze my neck in a few places, made his first cut, had to freeze again, started to resect pieces, had to freeze went on that way for a while until he could get at this little sucker which was way deep behind my muscle and everytime I would feel tense, it would slip further behind. So with some more resection, and some calming down on my part, he was finally able to get his biopsy, about 1cm of tissue. While closing, he told me that I was in the 5% most difficult to reach areas for this kind of biopsy and I told him that I was glad to challenge him. After getting stiched up and dressed, the surgeon came back to answer a few questions for us - no picking up kids for a few days, no lifting weights for 2 weeks, etcetera. I then asked him to see the CT scan and he actually went through it with us, it was extremely interesting to see how huge these nodes are compared to normal nodes. I also asked the surgeon, and showed him where, I have the little pains in my chest. He said that indeed, I was feeling the masses when I was working out. How crazy is it that I'm not going crazy!?

Ok that was a lengthier post than intended. Sigh. We won't know our results from this biopsy until mid-next week. I am supposed to hear tomorrow from the hematolgist's nurse about what our next steps are going to be. If I get some news, I will blog about it tomorrow.

Here's hoping that the T3 does the trick for me tonight.

Monday, December 7, 2009

And then she waited some more....

It's late Monday afternoon and, predictably, I haven't heard about my surgery. I am so aggravated and annoyed that I think I'll write about something else.

I went to the mall on Sunday afternoon with my Mom and 3.5. I had 2 unnerving cancer moments which, in retrospect, were probably more uncomfortable for the other person involved. First, I wheeled into a salon to buy some hairspray. I buy really fancy expensive hairspray because, as I've mentioned previously, I love my hair and it's worth it. So I pick up my bottle walk to the till and it hits me. Funny and sad and then the tears. Why am I buying expensive hairspray that is likely to sit on my shelf for a LONG time? The girl at the till asked me "are you ok?". Um no, I thought, I ALWAYS get this emotional over hairspray you tart! But I said through my weak tears, "ahhh, no, I'll be ok, it's just that I don't know if I even need this..." to which she said, "oh well I can put it back for you" and I said "no! I'll take it!". Sigh.

The next store I went in was Lululemon. I love "lulu", seriously, great stuff. So I see that they have these running hats that are kind of like skull caps and I think - hey, that might be great to work out in when my head is bald. So I ask one of the employees about the hat. I asked "is that wicking material and would it be good to absorb a lot of sweat, say when you are bald?". She says, "well are you looking for a man's hat, because that is a woman's hat". I said, "no, I'm looking for a woman's hat" and she asks (and I am not kidding), "oh, are you shaving your hair for cancer?" (all perky and bright like). Good grief, for real? I looked at her and almost laughed, I mean you would have to if you're me, right? I said "uh, no, actually I'm planning to just lose my hair". Double sigh!

Oh and the CT scan from Friday. What a delight. A phenomenal snowstorm hit the province mid-morning. We got to High River before it really got ugly, but we (Mom and I) had to drive home in some serious winter driving conditions. Luckily we made it through (slow and white-knuckled) and were home in a few hours. No news on the CT at all, more waiting I suppose.

Last, I worked out today on my own for the first time since the diagnosis. When I have an appointment with my trainer it's one thing, but I've been so tired (both physically and emotionally) I've struggled getting my behind on the cross-trainer. Anyway, I had a 35 minute "run" and watched Grey's Anatomy from a few weeks ago but I can't help thinking I can feel the mass on my chest. I am sure I shouldn't be able to feel it, but at the same time I really do feel it! I think my brain is working overtime.

Thursday, December 3, 2009

A frustrating week.

I think I've mentioned before....I hate waiting. This is one of those weeks. Patience is necessary. As a Mom of two young kids, I'm afraid to say that, my patience is mainly used on my girls. The cancer is not worthy of my patience.

I am still waiting for some information (an appointment perhaps?) for my surgical biopsy. It's the most important test right now. It's the ONLY thing holding us back from a concrete diagnosis. Last night S phoned in the early evening to let me know that I would hear something from the surgeon's office today and if I didn't hear something today that I would hear something on Friday from on of the other nurses in Hematology. S's game plan goes something like this. CT scan tomorrow, surgical biopsy early next week, me back at the Tom Baker on Friday, and chemo the following week. I got calls today but there seems to be more confusion than anything else. The surgeon's office (receptionist who is maybe out of the loop?) told me that my appointment hinges on the CT scan results which could take 7-10 days. I tried to tell her that the surgeon doesn't require the FULL report from the CT but just needs to view to see if he can "get at" the big lymph node in my neck. She said she didn't know about that. She would call me back. I asked if we could tentatively schedule something for early next week (which was the plan...) and she said that she would try to confirm with the surgeon. Sigh. Meanwhile, the PET scan lady called me and says that they would like me in before the 21st because they close for the holidays. Great! Except that you need at least 10 days between surgery and the PET scan. Ok so that doesn't leave me very much wiggle room here. Aargh. Finally I call the nurse (did I mention that S and the Hematologist have gone to a conference until Tuesday?) that is covering for S and we go through all of the details. She says that S shouldn't have explained the plan to me as it might not be correct, meanwhile I've been going through a load of emotions thinking I was starting chemo before Christmas. GONG show.

Now I am frustrated and a bit annoyed. The waiting is bad enough but the confusion and phone calls are just getting me on edge.


Tomorrow is the CT scan. It's scheduled for 10:45am and I'm supposed to be there for 2.5 hours. I have to fast so I'm gonna be a grumpy gal. Grumpy but still requiring positive thoughts and energy so that the CT scan comes back without any unexpected surprises.

My Mom is here, it's helpful, but I'm still grumpy.