Can't wait to Ring the Bell

Today's last and final day of Round 3 was spent in the AIC - the Ambulatory Infusion Center.  The Cancer Center was closed for the day, and the AIC does day patients much better than the hospital.
It is interesting - even though I have been a part of the "cancer community" because of my husband, I still cannot help but look at the bald heads and wonder.
The room is a big square room with vinyl recliners lining the walls.  There aren't large spaces next to the recliners for visitors and it is almost impossible - if side by side patients both have visitors - to keep from chatting to one another and eventually, eavesdropping.  In the corner, two nuns hovered beside an older, smaller nun and next to them, interestingly enough was a minister from another church and his wife.  The two groups shared a prayer and a scripture moment, then returned to their safe spaces.  Isn't it interesting how life tends to push different people together, we gain strength in the experience and then move back to our sphere of comfort until life pushes us again.

Our daughter's picture of her dad - a likeness???

The last day of a Round means the build-up of a week's worth of toxicity in the system and so Christian spends much and most of the time sleeping - but mostly resting.  We do crossword puzzles but talk very little - somehow I get too chit chatty and go faster than he is able after so much treatment, so I try to slow myself down and become the go-to girl and get things, or adjust them, or hand them over.
At the doorway of the AIC is a plaque with a  bell hanging off of it.  The bell looks very nautical and it has a rope pull that you can yank to ring the bell.  The plaque has the loveliest poem - which of course I cannot remember and I didn't write down.  The gist was this - when you have finished your last cancer treatment - ring the bell three times and go with strength and hope.  One of the nurses said that she cries every time she hears the bell ring.  So maybe, in the spirit of Christmas - and following the logic of "It's a Wonderful Life" maybe every time a bell rings, an angel does get his wings.  May the angels who have trod the hard, exhausting road of cancer with patience and long suffering receive the wings of freedom, of health, and of peace.  Go in strength and in hope.

Happy Turkey Day

Happy Turkey Day!

Happy Thanksgiving everyone!  This is Christian's wife Jana trying to keep this thing updated - something to remember with cancer blogs - if there is a big gap of silence things are either really, really good, or pretty bad.  I hope that I can bring you all up to speed on what's been happening.  

We decided to go ahead with chemo the week of Thanksgiving so as to stick to the original chemo 

schedule and hopefully finish the last and final round the week before Christmas.  Therapy at the hospital took 12 hours - whereas at the Cancer Center it takes only 6 - however, Christian's brother made a lovely visit over with some of their delicious leftovers and in between naps, Christian and I snuggled in bed and watched Sandra Bullock in "The Blind Side".  Christian's parents had our kids and it turns out their Thanksgiving plans hiccuped when dinner's lovely hostess came down with the stomach flu.  The Traditional Thanksgiving wasn't all that traditional but it wasn't bad or wrong by any stretch - just different.  

How could we spend the day - THANKSGIVNG day not feeling grateful for the doctors, nurses, family, friends, neighbors who have made this road just a little less rough - who have tried in every way to make themselves available by doing and being and loving.  Thank you so very much.  Enjoy your turkey induced coma!

WSCD? Let Cycle 3 Begin!

What should Christian Do?

On Sunday evening of last week, I got a call from my oncologist giving me the option of either delaying treatment during the week of Thanksgiving or proceeding according to schedule. Because the "day spa" is closed on Thursday and Friday, I would need to receive treatment in the hospital on those days, which would require some hoops to jump through.   Officially, I would need to be admitted to the hospital, but I would be able to go home at night.

We debated it, but the choice seemed fairly clear.  While I love the Thanksgiving holiday (it could be my favorite) and didn't relish spending it in the hospital as well as being sick the following weekend, I wanted to proceed according to the schedule for various reasons.  First, I didn't want to delay treatment and risk lowering the efficacy of the treatment.  Second, if I delayed treatment a week, I would have chemo during Christmas week, just like last year.  I'd rather sacrifice Thanksgiving so I can be home with family during Christmas week, although chances are I'll be sick.  Finally, I feel emotionally and physically up to it ad frankly, just want to get this over with.  I'd be hard pressed to think of a better Christmas present than knowing I was done with treatment and should be feeling better with each day.

So, I began cycle three yesterday.  We met with the oncologist before hand, all my blood work looks good and we were off to the races.  I took my little fanny pack home with my 24-hour drug and am back in the "day spa" getting some good hydration.

The last ten days have been adventurous.  The week following chemo I had a fever, abdominal cramps, back pain and the strangest combination of diarrhea and constipation. I'll spare you the details on that last one except to say it lasted for a good two weeks straight.  It appears to have finally disappeared yesterday.  The last week, I have generally felt pretty well, but it seems I always have a "big but".  I feel good but... 1) see aforementioned bowel movement challenges; 2) I developed a cyst along the incision scar from a year ago.  It was pretty annoying actually.  It hurt to bend over, had to keep my belt higher, could only sleep on a certain side or on my back and that required keeping my hands carefully positioned to keep the elastic band from hitting it.  Thankfully, it popped/opened/release the alien inside on Sunday morning and feels so much better.  3) Current challenge is with the bladder.  One of the chemo drugs is notorious for damaging the bladder.  Mine has been painful since Friday, but yesterday afternoon around 4:45, I was speaking to a client when jabs of pain began.  Enough to take your breath away.  I got up to make some copies (thankfully everyone in the office had gone home) and it struck again so strong I fell to my knees.  It kept coming on and off.  I managed to make it home and everyone knew something was wrong.  Thankfully we have those wonderful opiates at home.  I spent the rest of the evening in the recliner giving thanks to whatever pharmaceutical company had synthesized the drug and for the doctor in the hospital who had prescribed it.  I honestly don't know what I would have done without.  Ironically, with the diarrhea gone and the pain meds making me sleepy, I got the best sleep in week's last night!

So that's the latest and greatest.  Thanks again to all your love and support.  Words cannot describe how grateful we are.

AFP levels drop

In reviewing my blog, I see I forgot to give the most recent AFP levels.  We found out last week that my AFP levels have dropped from 32 to 7.  This is exactly the trajectory we want to see.  Normal levels in non-pregnant adults should be 6 or less.  Almost there!

Recovery Week - Harder than Chemo Week?

Looking back on things (at least from the perspective of how I feel right now, today), the first few days of chemo week are pretty smooth.  For the most part, you are still feeling pretty well.  About day 2 or 3 the leg pains begin, but I have learned to manage that pain fairly well.  Days 4 and 5 are harder as the nausea begins to hit you big.  I am hoping that we have learned to keep the nausea under control by balancing three different nausea medicines.  The hardest time seems to be Thursday of chemo week to Thursday of recovery week. 

After Round 1, I was hospitalized for neutropenic fever. After Round 2, I was hospitalized for to get the vomiting and pain under control.  The adventure continues.  Tuesday evening, I noticed I wasn't feeling as good as I expected.  At midnight, I was struck with a low-grade fever and these incredible stomach cramps.  I was on narcotics and the cramp felt that stomach hunger pangs.  I can only imagine how they would have felt without the narcotics.  With the stomach cramps came back pain and this crazy bowel movement which seemed to be a cross between diarrhea and constipation.  Thankfully, the stomach cramps went away by about 6 am.

The cramps came back at around 6 pm last night and stuck around until 4:00am.  When they went away, it was like when you take a turn after having the flu and you realize what it's like to feel normal again. 

I did go online last night to look up abdominal pain and neutropenia to see if there was anything I could do.  The results weren't pleasant.  There was no, "make some herbal tea of lemon and peppermint and take a hot bath", instead the results were clinical articles that addressed a variety of very serious conditions, some with fairly high mortality rates.  It was a sobering moment.  I had expected this chemo regime to be much like the first I had a year ago.  I assumed this, because no one told me otherwise.  I obviously knew and know the serious of the underlying disease.  But both my recent experience and what I read last night have lead me to realize that the chemotherapy medicines I am taking are incredibly toxic and dangerous for your body.  I can see some of you thinking, well duh!, we could have told you that.  But we're talking destruction of bone marrow, ulcers throughout your dietary tract, high risk of infection due to the destruction of the immune system.  And I don't mean infection that you might catch a cold or flu, I mean infections so hard to treat that in 20% to 40% of the cases they will kill you.

That got me to thinking about would you want to be told everything before begin chemo.  Usually I fall into the camp of complete disclosure, but in this circumstance, I think I appreciate not knowing.  First, the doctors don't know how any patient is going to respond and what side effects they will have.  The argument would go, why worry someone about a possible risk and add unnecessary anxiety.  Second, and this is key for me, I find I need to stay focused on the moment at hand.  It takes enough effort to focus on basic life functions such as, drink more water, eat more food, don't throw up, make it to the toilet, try and sleep, etc.

Those are my thoughts for the day.  Hopefully they are neither too disjointed nor depressing.  It's Thursday, despite the slight fever, weakness and fatigue (I will rest/sleep on and off all day for hours at a time) and fear of those crazy stomach cramps, I am doing really well.  Looking forward to a semi-normal week next week!  As always, thanks for the care packages, meals, etc.  We really appreciate the support. 

End of Cycle 2

Friday I went into the chemo center and vomited before I was even hooked up.  I think I threw up another two times during treatment.  I was happy to finish treatment and went home to sleep and vomit.  Saturday was more of the same, although I managed to not throw-up from 10:00 am until 3:00pm.  I couldn't keep anything down, including the anti-nausea and pain medicines.

We called the on-call oncologist and he was fairly insistent that we head into the hospital.  I wanted to wait and see if I could try and manage it at home.  But as evening come on the nausea grew worse so at 9:00pm we headed to the hospital.

I threw up again while they were bringing me back and that at least helped us get a room in ER.  We were in the ER for 6 hours as they ran various tests and looked for a hospital bed.  My blood tests came back phenomenally well.  White blood cell count and platelets were still normal.  Flu test came back negative, but the urine test showed possible infection.  Why do I share all this? Because the nausea was far more severe than we expected and we were trying to figure out why.  In the ER they bumped me up to morphine for the pain and then up another level to Dilaudid.  That made a difference.  The IV pain med and anti-nausea was enough to stop the finally stop the 32 hours of vomiting.

 

Yours truly. 

The wraps around my leg get pumped on and off with compressed air to avoid blood clots.

For the next 30 hours in the hospital I was finally able to rest and let my body start to heal.  We worked on getting the dosages and timing of anti-nausea right.  Because the doctor wanted to keep an eye on my heart activity during my stay, they put me in the stroke ward.  I was just happy to have my own room!  I got out yesterday around noon and went to the "day spa" (aka Cancer Treatment Center" for my white blood cell booster shot.  Several nurses at the "spa" had heard about my weekend and came to see how I was doing.  Apparently, I had looked like death warmed over when I was there on Friday and they had been concerned.

I got back to house, checked the mail, had lunch and went to nap in our bedroom when I discovered that my parents had been playing Santa early over the weekend and had got me a recliner!  Thank you both for it and for watching the kids and dog over the weekend.  Thanks to my brother for delivering it.

It was great to nap in it and I think I will try it out again now.  Conclusion: Home for now, back to a bit of work tomorrow (assuming all goes well) and trying to keep the nausea and pain under control for the next 3 days until the side effects begin to wear off.

Thanks everyone for your love and help!

Eeny, Meeny, Miny, Mo...

I thought I'd share with you some of the prescription drugs I have.  I say some because there are more on the way and we haven't picked up all the ones that have been prescribed.

The blue boxes are new 7-day anti-nausea patches for chemo week and post chemo week.  The tall bottle contains the pain pills for the Toxol leg pains.  The next three bottle are all anti-nausea.  The next one is an anti-acid reflux.  The next is a steroid to protect some organ (I can't remember which) from getting ulcers from the chemo medicine.  The last one is an anti-diarrhea, which I probably won't take. What's interesting is only the patches and steroids are supposed to be taken on a regular basis.  The rest are on a "take-em-as-you-need-them" basis.  It's a bit of a challenge trying to balance between the three anti-nausea and acid reflux pills.  That might sound odd, but if you think about it, acid reflux can seem an awful lot like the beginning of the need to vomit.  I've never been in a position to try and pick and choose between various medicines to see what works best.  It can be a bit frustrating at times, but like anything else, is a learning process. 

While the hiccups hit last night and the acid reflux returned, the leg pains didn't come last night.  I'll take it, thank you very much!  Those leg pains are a beast.  I think my voice is almost back, possibly to lose it again next week.  All in all, I am doing great.  So glad to have Round 2 almost half-way done!

Round Two Begins

Thankfully, my platelet count shot up from 50,000 to 450,000 and white blood cell count went from 2.5 to 5.5, so we were able to proceed with Round Two yesterday.  I got my pump and 558 ml of Toxol and by 2:30 was on my way to work.  The nurses and physician's assistant are always very concerned about how I deal with the Toxol.  The nurse told me yesterday that allergies to it are somewhat common and normally they have the patients with them the whole time at the treatment center as they are receiving the drug so that they can monitor the patient.  Because I take it home with me, they don't have that luxury.  The nurse also informed me that a big reason they are concerned is the dosage.  He said I am receiving about 4 times what a breast cancer patient receives.  Strong stuff.  Hopefully it does the trick.

Day two has gone fairly smoothly.  I got here at 9:30 and looks like I will get out around 5:30.  Tuesday through Friday are long days.  I get some work done, play crosswords with Jana, nap, read.  As the week progresses more napping and resting occurs.  I get so tired, and I know this sounds wimpy, but even responding to emails starts to get tiresome.

The side effects might begin tonight.  I feel that it is better to know that they are on their way and what they might be like as I feel somewhat prepared to tackle them again. 

So that's the latest and greatest.  Hopefully we will find out my AFP levels tomorrow and hopefully they will have gone down again.  I keep telling myself that at the end of this week, I'll be halfway through chemo, and that ain't bad!

I know I might sound like a broken record, but a huge thanks again to everyone who has sent packages, cards, emails, meals, helped around the house, called, texted, etc.  I cannot imagine going through this alone and the support we have received has been wonderful.  Thank you all!