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.

Monday, November 30, 2009

Freaking out and the Waiting Game

So last night I freaked out. I got sad, scared, angry, confused, and anxious all at once. I guess it was about time. I want to be strong for everyone, including myself, but once in a while, I suppose, you just have to cry.

Anyway, I heard from the nurse practitioner today and my CT (neck to pelvis) is scheduled for Friday in High River. Woohoo! Road trip! I talked to "S" (nurse practitioner) a few times today as I told her about my freakage outage and also asked her a ton of questions (most of which she could not give a definitive answer to but tried her best anyway to appease me). I found out that, if the surgical biopsy on my neck lymph node comes back the way they expect, I am likely to be given ABVD chemotherapy, 6 cycles. I'm not entirely sure that I understand what 6 "cycles" are but it sounds like I'll be getting treatment for 6 months to a year. My reaction to this wasn't great but I really got choked when I asked her about my hair. I could write an entire blog post on this topic alone. I am very likely to lose my hair. This may seem a trivial issue to some people but for me, it's like, why don't you just kick me when I'm down? No matter what my weight, shape, or size, I've been a fan of my hair. It's fine, I have a lot of it, and it's always been something people comment on. So the big question is....Am I a bald kind of girl rockin' the scarves or am I a wig kind of girl? Sigh. I wish I didn't have to find out.

Moving on...S also suggested getting my Mom out here for extra support during this waiting game. She acknowledges it's the most difficult part and that my Mom would probably appreciate seeing me and knowing that I'm "ok". I think it's a great idea and also, hopefully, will take a little stress off of my husband who definitely has a LOT on his plate right now. So I'm hoping to fly Mom in on Wednesday and perhaps she can accompany me to my CT scan and will be here for the surgical biopsy (which we are hoping is early-ish next week). I already feel calmer knowing that she'll be here - what is it about having your Mom around that just makes everything better?

I've also made some decisions on my personal training/working out. I am going to shoot for 3 work outs a week (2 less than normal) in order to maintain my weight and keep up my strength. I'll work out with my trainer until it's not possible or not recommended and he promised he'll try to work around my schedule. I had a thought though, what do I wear on my head when I'm bald and I'm working out and sweaty? Hmmm, I'll have to figure that one out.

I need to get a good night sleep tonight as last night was a waste. Hoping that I don't have a repeat tonight and I can increase my energy levels a bit for my training session.

Sunday, November 29, 2009

The Preliminary Diagnosis

Wednesday, November 25th

My husband came with me to the meeting with my family doctor. My doctor explained that the preliminary diagnosis from the pathologist is Hodgkin's Lymphoma. While I felt sick to my stomach, I wasn't entirely shocked. I'd been preparing myself for the worst while hoping for the best. My doctor talked about prognosis and next steps and I felt numb. It was time to line up a CT Scan and get referred to the Tom Baker Cancer Clinic. Questions swirled in my head. When will I be treated? How bad is it? How will my family be impacted? Will I lose my hair? How will I tell my family and friends?

The rest of Wednesday was spent on the phone talking to various people in my life. It was awful. I stayed strong, but it was awful. The logistical things started to sink in too - cancel travel plans, handling the girls through testing and treatment, who can help us, and when am I going to get treated?

Thursday, November 26th

8:30am the phone rings as we are getting ready to leave for pre-school. It's the Cancer Centre and they want to see me tomorrow. They want to "get their hands on me" and feel my neck and talk to me. The nurse explains that I will need a surgical neck biopsy (yuck) and I need those CT scans done immediately. The nurse is on the ball and super friendly and warm. Exactly what you would expect but rarely get.

We drop our oldest daughter off at pre-school (my husband is with me because he'd booked time off due to a trip I was supposed to be on) and head to get our H1N1 shots. My husband thought of the vaccination before I did...with a compromised immune system it was now a no-brainer. We'll get regular flu shots next week.

Thursday afternoon, 2 more calls from the Tom Baker and a booked appointment for Friday morning to see the nurse and the hematologist. OMG things are moving so fast. I think I am still in shock.

Friday, November 27th

I had my first horrible sleep Thursday night. I suppose the anticipation of my first "cancer" appointment kept me up. Every dream I had was about cancer and I think I woke after each one. Interestingly, they were all positive! We arrived at 8:30am for our 8:45am appointment. I got my cancer "club" card at the general reception area and headed down to the "daycare" unit. Once there it was off to the lab for more bloodwork. Then we waited as our real appointment (apparently) wasn't until 10am. First we met with the hematolgist's assisant/nurse. She was positive but explained that, because we didn't have a concrete diagnosis, the doctors would not call this Hodgkins Lymphoma yet. Apparently there is an outside chance. But it's VERY outside. She gave me a book about lymphoma and took my height and weight and answered a few of our questions. Then we met the Nurse Practitioner. She came into the room and gave me a great big hug. I thought I was going to cry but in this crazy cancer Karla world, I didn't, I just smiled and carried on. More questions about my medical history. More explanation of the fact that we don't have a definitive diagnosis yet and that to get that diagnosis we need to do the surgical biopsy and the CT scans as soon as possible. Hopefully the next week to 10 days. Sigh. I hate waiting.

The nurse practitioner examined my neck and other lymph node areas. The big node in my neck is a bit of a concern as it is "deep" in there. I also know that there is another enlarged node in my chest. Apparently this is very common in Hodgkin's patients and, while it probably means I'm Stage II, it's really not a "big deal". There is also some discussion of the past year of my medical history and how I got to this point and discovering the lump. The nurse intimates that they are a bit interested in my arthritis and suggests that a PET scan is in order to ensure that there is nothing else going on. Enter the Hematologist. I think she's younger than me (how can this be???!!). She examines me and says that my lymph node is so deep in my neck that she would have thought it was my thyroid. We also talk about the need for a bone marrow biopsy. Dear me, that sounds worse than the surgical biopsy! They insist that it won't be that bad as I'm thin and it makes it much easier to get at (SHE SAID I AM THIN!!). They also say that it is unlikely there will be anything in the bone marrow but that they perform it to rule it out.

They also assure me that, even though I have to wait for all these diagnostic tests, there is no cause for concern of the lymphoma getting worse. Lymphoma acts very differently than a "hard" tumour like a breast tumour. 2 months from now they would see a minute difference in me from today if I hadn't started treatment. Well I sure hope they are right about that!

They sent me off for a new series of chest x-rays as my ones from the previous week have come back saying I have a mass that is 30cm....I kind of think I would FEEL that on my chest!! We head home at noon. There is definitely a sense of relief. I feel like I am going to get taken care of. I feel like they really care. I feel like I can allow someone else to take control for a while. I have a HUGE nap after we get home on Friday afternoon.

So here I am. No tests scheduled in stone yet 4 impending ones over the next few weeks. I should hear tomorrow about the CT and hopefully the neck biopsy. I may have to go to Canmore for the CT.

Saturday, November 28, 2009

The last 2 weeks of my life and the longest blog ever.

Pretend for a minute that this is you. It's November 25th, 2009. You are 37 years old, just celebrated your 5 year wedding anniversary with your amazing spouse, you have 2 wonderful little children (3.5yrs and 15 mos) and just got into great shape over the last 6 months. Sounds pretty good, huh? Then something happens. The unthinkable really. You are diagnosed with cancer. You know, the big "C".

That is the Reader's Digest version of my story.

The Technical/Chronological Stuff

Immediately post-partum of my 2nd baby (August 2008), I had incredible pains in my lower back and pubis symphysis. I suffered for a few months until I couldn't bear it anymore and ended up getting an MRI and blood tests and wound up in the Rheumatology Department in February 2009. My ESR/CRP count was higher than the doctors wanted to see and I was defnitely exhibiting some arthritic symptoms so the doctors said that I might have something called Ankylosing Spondylitis, which, roughly described, is arthritis of the sacroiliac. So I was a good patient. A great patient. I took ibuprofen twice a day and did physiotherapy twice a week. I got better quickly and by the end of April I was completely off ibuprofen and was able to wind down my physiotherapy shortly after that. I went back to Rheumatology in May and they liked what they saw, except for the fact that my ESR/CRP was up another 10-15 points. They asked me to follow up with them in August. I started personal training twice a week and cardio 3 times a week and felt better and better. I attended my appointment in August at Rheumatology, to find out my first doctor was now on maternity leave and I had about 5 minutes with the head of the department. I told her I felt great, she told me my ESR/CRP was up again and that I should not come back to Rheumatology (unless I had pain) and to repeat the blood tests with my family physician.

I am a good patient. I followed up 4 weeks later with more labs. MY ESR/CRP was up again. I asked what the number was, she said 55. She asked if I felt ok. I said yes. We decided to repeat the test in 4 weeks. It was September. Pre-school started, dance class started, I was working out 5 times a week, the girls started to drop naps, I lost track of time. So, at 6 weeks I had the test repeated. November 12th, I got a call at home from my doctor. My ESR was 72, CRP also high. Please come in, we need to revisit your charts.

I am a good patient. I am also a good student. I decided to find out everything I could about the ESR and CRP tests. The best I could glean was that they are an overall indicator of inflammation levels and in some cases they are used to indicate a person's "healthiness" or response to treatment. I also learned my ESR level should be like 8, not 72. I read that the test has to be properly conducted or you will get an incorrect reading. I figured that didn't apply to me as my tests just seemed to go up and up and up. My body was trying to tell me something.

I surfed some more. What types of diseases use this test as a diagnostic tool? Google. Arthritis (obvious), cancer....ok I didn't get past cancer. Lymphomas. What is a lymphoma? Google. Symptoms of Lymphoma. Google. Fatigue. What Mom isn't tired? Night sweats. Yeah but women have "temperature issues" right? Neck lump. Let me see, right hand goes to right side of neck, and OMG. I have a lump in my neck. No I don't, this is preposterous. Mom, do I have a neck lump? (Mom is in town because my hubby is in the UK for work). Yes, I do feel a neck lump. Crap. Skype hubby. Can you see this neck lump? Um no, you are overreacting. Right. Probably. Hubby comes home on Saturday. Yes, I do feel a neck lump. Sick feeling.

Tuesday November 17th. Appointment with my family doctor. Hubby comes with me as I have an ominous feeling. We review my charts and family history and then I drop the bomb. I have a neck lump. I think. She examines and confirms. Do I have a sore throat? No. Do I have a cold? No. Me - what are you thinking this is? Well it could be anything. Yes, I say, but I do know what the worst could be. Which is? Lymphoma. Yes, but that's an outside chance. Right. Tuesday night - labs, chest x-ray, hockey game.

Thursday November 19th. Ultrasound of abdomen and neck. Tech asks me to wait while she confers with the radiologist. Two minutes, three minutes, four minutes...ten minutes and a knock on the door. Now, I've had my share of ultrasounds but never had this happen. Radiologist walks in - we are seeing multiple abnormally sized lymph nodes in your neck. Your organs look good so that is encouraging, but you need to phone your doctor immediately and book a fine needle aspiration (FNA). I'll be honest with you, in someone your age and with no other symptoms, we often look to lymphoma. Don't wait for your doctor to receive the report from me, get on it right away. The drive home (by myself because radiologists NEVER tell you results when you are there, right?) was bad. Probably shouldn't have been driving. Talked to my doctor and they end up booking the FNA for the following Tuesday.

Tuesday November 24th. Start you day with an FNA and nothing worse will happen to you that day. As I described it to my husband on the way home, it was like being in a sci-fi movie where the aliens (pathologist) were taking samples of the human (me). Anyway no freezing, 2 biopsies, and no answers. You'll get the report by Friday morning at the latest. Sigh. We walk out of the office and I burst into tears. Two minutes later I'm ok and we're on the way home.

Wednesday November 25th. 9:01am my doctor's office calls. We have some preliminary results, can you come in at 11:30am. My hear racing from the shock of the call (when I was expecting nothing until maybe Thursday) I call my husband and go to the mall. Shopping. Shopping can take my mind off the next hour and a half. Please let it take my mind off of everything.