:: Battle with the Beast ::

:: Wednesday, January 21, 2004 ::

OK, I'm still here and alive. A little more scarred, more scars to come. But hey, I'm still here! Haven't posted in a while so will just update by copying part of my PatNet from MPIP. Will eventually get around to writing more often, when I feel like it.

So....here's the update:

14 Jul 03 – First interferon treatment, 36 million units/day. Nurse had a terrible time finding a vein for the IV, so she called Dr. Keller about getting a PICC line (peripherally inserted cardiac catheter) so I don’t have to get poked daily 4-5 times. Am keeping the IV access in until the PICC is put in. Hopefully, this week. Given Tylenol and Stemetil (nausea) before treatment. First night of INF thought…Is this all? No huge side effects. Second night, man-oh-man, knocked me on my butt. All the standard effects – Fever, chills, aches, pains. Remainder of the week, not quite as bad as Tuesday, but still no fun. PICC line installed on Thursday – sigh of relief.


28 Jul 03 – White counts are down, neutrophils especially. So treatment postponed for a week. Improve after one week, so back on treatment. One other break due to low counts after week 3.


5 Aug 03 – Follow-up with Dr. Weatherhead (derm) – nothing suspicious at this time. Had mould made for Radiation. Mould fit on 8 Aug. Rads planning 13 Aug. Final planning 27 Aug.


14 Aug 03 – Appt with Dr. Keller. Met with Dr. Basternelli instead. Concerned about continued swelling in left breast post surgery (no lumps) so scheduled for mammogram. Mammogram clear.


25 Aug 03 – Last IV interferon!! Counts were low again, but begged to be allowed to finish. Dr. agreed since the counts were just borderline low.
3 Sep 03 – PICC line removed. Think I’m going to miss it.


9 Sep 03 –First Radiation treatment. Schedule is 5 wks at 5 per week.


10 Sep 03 Inf follow-up with Dr. Keller - counts ok again. Will start low-dose after I finish rads.


9 Oct 03 – Follow-up with Dr. Bodurtha (surg) – scar looks good.


14 Oct 03 – Last Radiation treatment. Had pretty nasty burns at the end. Took almost a month to heal. First meeting of Connextions 18-35 – support group for young(ish) patients.


15 Oct 03 – CT scan of chest, abdomen & pelvis.


3 Nov 03 – Appt with Dr. Keller. Saw Dr. Wong instead (she consulted with Dr. Keller on all my questions) Get prescription for low dose inf – 18 million units 3/wk to start Nov 10. CT results back – nodule in right lower lobe appears to have grown to 9mm (originally 7mm) but could be difference in measurement technique. Keller says to wait for Jan scans to see if there is a change. I’m not happy with that. Agrees to send me to Dr. Maziak (thoracic surgeon) for consult.


6 Nov 03 – Consult with Dr. Maziak. Really like her no-nonsense approach. She schedules Head CT (since it wasn’t done), bone scan, respiratory function test and Fine-Needle-Aspiration (FNA) Biopsy of lung nodule. Gives me info regarding possible wedge resection if nodule is positive for melanoma.


10 Nov 03 – First self-injected low dose interferon treatment – 18 million units. Giving myself the shot was much easier than I’d imagined, especially using the “pen”. However, side effects the first night were as bad, if not worse than the IV phase. Fatigue, fever, chills, night sweats, vivid dreams, nausea. Can I stand a year of this? Luckily, side effects were considerably less the next few days (weeks) – still there but not so incapacitating. Spent my 33rd birthday in bed feeling like crap.


14 Nov 03 – Radiation follow-up. Released from care by Dr. Girard.


17 Nov 03 – Appt with Dr. Weatherhead (derm) He’s out sick so an associate filled in. She gives me a full check-up, mentions one mole to watch (near original site). I ask about my WLE scar which has started to get tender – scar tissue.


19 Nov 03 – Head CT, FNA biopsy of lung nodule. OWCH!! Numbed the skin, but I was wide awake for the whole thing.


24 Nov 03 – Bone scan and pulmonary function tests.


1 Dec 03 – Follow-up with Dr. Maziak. It’s melanoma. Promoted (demoted?) to Stage IV now. Surgery scheduled for 10 Dec. Stop interferon injections per Maziak as it can inhibit healing, will resume once recovered. So only 3 wks of injections completed.


10 Dec 03 - Thoracotomy with Bronchioscopy and wedge resection of right lower lobe. Spend 4 nights on the Thoracic Observation Ward. Am able start doing my exercises the morning after surgery. Walking on Day 2 post-op. Released Sunday morning, 14 Dec. Morphine for pain.


22 Dec 03 – Appt with Dr. Keller. Paperwork snafu between Hospital & Cancer Centre. He was unaware of the biopsy results or that I had surgery. Will be making copies of all documentation to put in Cancer Centre file from now on. Discuss sleeping troubles during interferon & pre/post-surgery, he prescribes Lorazapam 1mg per night. Will probably resume interferon in Feb 2004


8 Jan 04 – Appt with Dr. Bodurtha (surgeon) follow-up from WLE, SNB & LND. WLE scar has continued to bother me. He checks it out and immediately does a biopsy of two lumps that have come up under it. He doesn’t seem to think it’s scar tissue.

Sub-Qs? Will know in about two weeks….

Jan 16, 2004 - FNA biopsy came back positive. At least two subq's
under the WLE scar. Dr. Bodurtha is scheduling an abdominal CT (guess
if I have to have surgery they want to get every possible thing
covered) but I have no "gut feeling" about problems with the
liver,etc. Sugery will be scheduled as soon as I get results from the
CT. Probable skin graft this time.

Am PISSED that it's back.

:: C'Mell 6:24 PM [+] ::
...

Ok, last night turned out to be one of the worst so far. Possibly because I'd not had interferon for 10 days, but my fever was higher than it had been so far. 39.1C or around 102F. Oddly, I didn't have the shivers with the chills I've had before.

One reason I was more concerned about the fever was because of the PICC line incident. The nurses all told me to call triage if it got higher than normal. So I did.....and they never called back. Ugh. Fever finally broke at about 4am. This morning it was only 36.2 (when 36.7 is normal), so I guess it was nothing to worry about. Still I made sure to tell the nurses about it today, and ended up getting poked for my effort.

They tried to pull a clean sample of blood - not from the PICC, to compare it to the PICC blood to make sure there's no infection anywhere. Should know more in a day or so.


:: C'Mell 8:02 PM [+] ::
...

This can only be described as the comedy of errors day. (Of course, nothing was funny while it was happening)

First, I had an appointment with the derm so I got up "early", showered and while I was sitting on the bed drying off, I noticed that part of my PICC line was hanging free. Upon closer inspection, it was not the part that has the nice little clip that seals it off, but instead the part closest to where it goes into my arm. Holy shit! What do you do?? Visions of all the tv shows where the patient is killed by injecting air into a vein kept running thru my head.

Normally, I'm reasonably composed. Not for this. Chris came in to find me sitting staring blankly at the unstopped little tube hanging out of my arm. He tried to console me, explaining if it were that serious someone would have warned me. Deaf ears. He suggested I call the ORCC triage line. After stumbling around a bit, lightly putting the little gizmo back in place, I reached for the phone. Arrrrgh! They don't open til 830.

My appointment with the derm was for 915, so I packed up my purse, grabbed money for the bus and headed out the door - those visions still haunting me. I got downstairs and walked a block or so and realized I didnt have correct change for the bus. I headed into the corner store to find two of the employees leaning over the cooler with a shop vac. Argh. So I turn to go to the car where there's a stash of quarters, then realizing I didn't have the keys to the car. Getting closer to the building, I realized that I not only didn't have keys to the car, I also didn't have keys to the building or apartment! Argh.

Chris is going to have a field day with this. So I decided to go back to the store and buy a hot bottle of water to get the money for the bus. Change in hand, I start toward the bus stop, only to see the bus rolling past the intersection. Maybe I can run? (I can't run to save my life!) I ran. The driver was kind enough to stop about half a block before the stop to let me on. Thankfully noone was waiting at the stop. Ok, string of luck is broken.

I get to Dr Weatherhead's office, still upset over the PICC line and planning to go directly to ORCC after my appointment. If it's going to kill me it would have already, right? Appointment with Dr Weatherhead goes well. He does the full body check. He's got a pretty good bedside manner so we laughed a bit as we talked about how one gets from point A to point B in life. In his case, Barbados to Ottawa. Still in a bit of a fog after the PICC chaos, I nearly walked out without scheduling my follow-up appointment. 3 month intervals for 2 yrs, 6 months for 2, then annually for life.

Off to the bus again and over to ORCC for blood work and hopefully good news on the PICC. I arrive and who's at the desk but the nurse I'm not crazy about (she earned brownie points today folks.)

:: C'Mell 8:49 PM [+] ::
...

Almost a full week break from the lovely interferon. Still incredibly tired. Asked one of my chemo nurses about it and she suggested doing a bit more exercise. Somehow exercising when you get winded from taking a shower is hard to comprehend. But I'm trying. Taking the doglet for longer walks (and napping when I get in!) Being tired is exhausting.

Chris, Mister-Sleep-as-much-as-you can, has decided I'm sleeping too much. He's probably right. And that's probably increasing the level of tiredness I feel. So I've been sleeping a bit less, resting as much as I can, walking the dog a bit further, and eating lots of fruits. Oh, yeah, and not getting my interferon for a week. It's all going to take effect on Tuesday and I'll feel great I'm sure, just in time to start the IV's again.

I did get a call to schedule the radiation mold (This crash between Canadian and American spellings of words is too confusing sometimes!), fitting and radiation planning meeting. The mold will be done before my chemo appt on Tuesday, with the planning meeting on Aug 13. It'll be nice to know when the next bit of all of this starts, especially since the interferon was delayed due to blood counts.

One more day off before I go back. Tomorrow is the Canadian Civic Holiday.
:: C'Mell 1:46 PM [+] ::
...

From Wednesday on I felt pretty tired but the headaches were less of a bother. Unfortunately, today (Monday - Day 11) I did my blood work and my white blood cell counts and my neutrophils were too low to allow treatment this week. Makes me mad that my damn body can't handle the interferon!

So I've got an unwanted one-week break. Bummer. I want to get this interferon stuff over with!

:: C'Mell 9:06 PM [+] ::
...

Day 7 - Tuesday

Ugh. Even though I got 500 mL of hydration today the side effects still got me. Looks like Tuesdays are going to be my day from hell. Headache started before I was even into the bag of Interferon good. Chills started before I left the cancer centre. Came home crawled into bed, shivering. Slept thru the worst of it. Fever was up to 37.9, but slowly came down over the night. By 10, I felt reasonably well - even took the dog for his nightly walk. Was exhausted when I came in from it and went straight back to bed.

Mouth is still sore, but the meds seem to take the worst of the pain away. Appetite is....mediocre. Headache is still hanging around today, but not as debilitating as it was yesterday immediately after treatment.

But! that's 7 down, 13 to go, or 35% complete. Yay!
:: C'Mell 10:52 AM [+] ::
...

Day 6 - Monday

What a breeze. No side effects today at all. Had a full 500cc of hydration. That makes all the difference in the world. :) I had started getting mouth sores over the weekend and got some meds for that - Nystatin and something for ulcers. Expensive stuff, but if it allows me to eat, I'm happy.
:: C'Mell 11:27 AM [+] ::
...

I've decided to be a bit more brief with the daily breakdown just because as Ozzy once sang....."I'm soooo tired, so tired."

Day 2 - Tuesday

After the trouble with finding the vein, I'm scheduled for a PICC line. So instead of poking me daily until I get it they left the little IV tubey thing in my wrist to use each day. But because my veins are so tiny, Dr. Keller ordered that I not be pre or post- hydrated so not to blow the one vein they found. Boy oh boy...does that make a difference. I took my treatment, since Monday went so well, Chris and I decided to take the bus instead of driving.

So I got the meds, no side effects yet, still eating, still good on all counts as far as I'm concerned. Then on the bus on the way home, the chills from hell. Poor Chris, he didn't quite know what to do/think. But he got me home as quickly as he could and I went straight to bed - where after a few hours, I was no longer freezing. I felt well enough to get up and have dinner with Chris.

So have them HYDRATE, HYDRATE, HYDRATE. Lesson for today. (Even all the water/gatorade I was drinking didnt help!)

Day 3 - Wednesday

PICC line has been rescheduled until tomorrow. So again, I got the meds without hydration. Luckily, the chills waited until I got home, where I crawled into bed and slept for several hours. Headache is still a bear, but hydration should help with that as well.


Day 4 - Thursday

PICC line day! So what's a PICC? Peripherally Inserted C**** Catheter (will double check on that terminology). Its a little silicone tube that goes in your vein with an IV thingy on the end of it, so you never have to get stuck again. The procedure was amazingly pain-free. The PICC nurse numbs the area (inside of elbow) with a gel which takes effect over the next 20 minutes or so. Then she comes in with a basket of goodies (including a magic wand!) and sets up shop for the line. (Warning: This next bit sounds MUCH worse than it feels) Once you're good and numb, she double checks the area where the PICC will be inserted, rubs you down good with alcohol and pokes you with a huge, hollow needle. The silicone tubing is actually threaded thru the needle into your vein. And since your veins don't have nerve endings, you don't feel a thing! The actual procedure was finished in about 20 minutes or so. Then she threaded all the external trappings on and taped me up and....WOW, no more pokes! Sue, the pink PICC nurse, you're an angel.

So, after the PICC was installed, I went into the Chemo Treatment Unit and they simply hooked a clamp to the external part of the PICC and wha-louie! I got my interferon with no pain! Unfortunately, the nurse didn't hear my pleading for a bit of hydration, so I had the horrible headache and chills again.

Day 5 - Friday

PICC lines make all the difference in the world. My wonderful nurse today gave me lots of hydration and then my interferon and I had no headache, no chills, no tummyache. It was wonderful.

However, the nurse yesterday did a blood draw and my hemoglobin and my white blood counts, especially my neutrophils, were quite low. So I nearly didn't get treatment! Since they weren't supposed to test me, the doc ok'd me to get treatment today, with followup blood work on Monday. So I was just extra careful not to expose myself to bacteria, wash wash wash those hands and I made it thru the weekend well, other than being extremely tired.



:: C'Mell 11:26 AM [+] ::
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