June 15 Surgery update.

Carl's neck surgery at Froedtert on Wednesday June 15, 2011 went well according to the surgeon.  Now Carl has to recover, which is painful, but the hard part is (hopefully) over.  I don't want to jinx anything, but I want to give out an update. 


Monday June 13, 2011 Carl was in SICU (S=Surgical Intensive Care Unit) after a angiogram with embolization procedure, which was done under full anesthetic.  Carl did not eat at all on Monday.  He had to lay on his back from 9:00 AM until midnight.  

Tuesday June 14, 2011 Carl was in NICU (N=Nuerological Intensive Care Unit) after an angiogram procedure was done to balloon and block off his left vertebral artery.  This procedure had to be done with Carl fully awake, not even lightly sedated.  Carl didn't eat at all until past 9:30 PM, when I tempted him with whatever I could find from Froedtert's all night cafe, because he couldn't eat or drink anything after midnight.  He ate a sandwich, applesause, milk, a candy bar, 3/4 of a pear, and a blueberry muffin. 

Wednesday June 15, 2011 Carl was in NICU after the neck his third neck surgery in 2011 - this surgery debulked the tumor in his neck. (Carl got operating room # 13-sigh...).  This surgery was done under full anesthetic.  He didn't eat at all on Wednesday, and had to lay on his back the entire day, except for when he was being operated on, when they rolled him to his stomach and the surgeon worked from the back of his neck.  Really, though, I haven't figured out if Carl even remembers anything after they took him to surgery at 8:30 AM. Carl got heavy duty pain medication - including Morphine.  It seems almost wrong to type 'Morphine' - like it is a bad drug, and he shouldn't have gotten any, but I am glad that he was able to sleep with apparent comfort.

Thursday June 15, 2011 Carl graduated out of NICU to the Spine care 'floor', walked a tiny bit, had soup and a pastrami sandwich (from Benji's - a deli we both love), and ate several times, watched a movie. His pain medications are back to oxicodone and oxicontin. 

I will be happier once he is home.  Then I will be freaked out that he might get a fever, fall, etc.  That's just kind of the way it is.  Stress either way, but at least at home things are calmer.  

2011 Summary (so far) and 2nd Surgery update

Wow, it has been a while since I have done an update. Perhaps no news is good news? It's been so long I'll do a brief summary of 2011 with regards to Carl's medical journey. I'll start with December, just 'cause.

Dec 27-Dec 30, 2011 Carl had inpatient Chemotherapy at Froedtert. They let him out one day early so that he could enjoy New Years Eve and Day with his family.

Carl had the hardest time recovering from this particular chemotherapy, and pain increased in his neck. The Doctors decided to operate on his neck to stabilize his neck and debulk the tumor, and the neck surgery was done on Jan 24, 2011. Carl was sent home from the hospital wearing a neck brace, which he wore for 23 plus hours a day, except in the shower, for weeks, and instructions not to drive.

After the surgery Carl was recovering (sort-of) but then the pain in his neck was getting worse. The surgeon saw Carl, took an X-ray, and determined that Carl's spinal fusion had failed, and included a screw pulling out. Carl had an emergency surgery on Feb 14, 2011 to repair the failed hardware. On this surgery they pulled out the screws and put in larger screws, used acrylic glue and more hardware, and fused Carl's neck from the base of his skull to C7.

Carl was released from the hospital on Wednesday, February 16, 2011. After a week or so, Carl felt good enough to start working again, although with reduced hours. Again, Carl was sent home from the hospital wearing a neck brace, which he wore for 23 plus hours a day, except in the shower, for weeks. He won't be able to drive a car for at least six weeks.

Life with the children, of course, continued, and the weekend of Feb 25-27, 2011 was particularily busy. Anthony (a freshman) was in a great musical for 4 days, Miranda (6th grade) was in forensics, and the three younger children had a piano recital, and poor weather made some things more difficult. We survived the activity, but Carl overdid it that weekend. The funny thing about overdoing things is that "hindsight is 20-20". After you overdo something, you know that hey - you overdid it, you shouldn't do that. But by then it is too late. Fortunately, Carl survived, with no ill effects.

The 2nd surgery's spinal fusion has lasted longer and worked better then the first surgery, so far. On Thursday, March 10, 2011 I took Carl to see the surgeon for a post-op appointment. Carl had an X-ray and the surgeon said things look great. He even said Carl could start wearing the neck brace less (an hour or two each day), and that Carl should start PT (Physical Therapy) next week.

This week, later today, in fact, Carl will meet with the radiation Doctor, and 'the doctors' will start planning the next link in the chain of treatment.

Monday and Insurance

Monday, January 31, 2011. The weekend was Long. I was looking forward to Monday, don't know why, but Monday seemed like it would be simpler then the weekend. Less noise, activity, etc.

Insurance lady called Monday. [I am reviewing this post on 4-22-2011. I called her a lady. Now I am changing that word to machine. She is not a lady, and I don't even think she is a human.] Now that is stress. She wants permission to be the case manger for Carl. Her husband died of cancer, so she knows what I am going through. Really? I don't know what I am going through, but talking to her, God my stomach gets in such a knot, I feel like I really want to barf. Her questions, comments, insinuations of 'help', they made me feel like I was talking to Satan. I DO NOT TRUST ANY INSURANCE COMPANY. I THINK THEY WOULD PREFER MY HUSBAND DEAD SO THE CASH OUTLAY WOULD STOP. If an insurance company could get away with it, I think that there are people in the top echelons of insurance that would like to send a hit man to finish the capital outlay so they can 'make more money'. [I am reviewing this post on 4-22-2011. Today, I calmly and skeptically wonder if the insurance's machines' husband really existed, or had cancer, or if it was all a line to establish 'report'.]

The principles of good honest business are that you make a contract, initially believed to be good for both parties, and you honor it. If your business involves you taking a risk, you accept it. Trying to renege on a contract for profit is Evil perverting business.

Any F-ing individuals who think that what is good for business is good for the country, who think Fraud will self regulate, who think greed is good, who think consumer rights are anti-business, who think tangled contracts with loop holes are a good thing - they are EVIL, and sure sign that Satan is winning. How the HELL does the conservative party in any way equate with Christianity - caring for ones fellows man, that has to be the LIE OF THE CENTURY. And Satan is the prince of lies.

So now you might think I am a religious freak. (But then I'd be a very conservative Republican?) I am not, really, at least I don't think I am.

Carl took his first shower / bath today post chemo. It makes me want to cry. I think they put his head back on wrong. I think a first year resident stitched him up. And yet this totally conflicts with my also Genuine feelings - I am so damn glad he had the surgery and much of the tumor was gutted.

[4-22-2011 addition: I added the photos above on 4-22-2011. These photos were taken Jan 23, 2011, the night before the neck surgery; Jan 25, 2011, the day after surgery; on Jan 31, 2011 right after his shower; and Jan 31, 2011 with the Aspen collar neck brace Carl wears 24 hours a day except when in the shower.
Carl is not holding his neck that way to be funny. That is the only position his neck can be in.]

You might think I am in a crisis . Yes, I think I probably am. It's weird that a crisis can be helped by punching keys.

I don't know why, but I feel better after writing this. I am not sure I should ever publish this, but writing from the heart is supposed to make your writing powerful. Raw, yet real. I want to let this rip out there - maybe it will touch someone for a good purpose. Waiting, rewriting, would make this more objective, but is all writing supposed to be objective? Perhaps we should not be afraid of raw emotion now and then.

I pray that this post will go out and do God's will - that this writing will touch someone in some way for Good. I pray that God only allows those people that should see this see this. I am not against any political party, of any person employed in any job anywhere. Many businesses do good, some do evil (drug dealers, for example). Many people are employed to do good, some to do evil, many work just to have a paycheck to take home to their family and don't think about their job in terms of good OR evil. I hope you always try to do what is right, which to me is what is Christian. But the 10 commandments span more religions then just Christianity, and include the basis for many business rules - contracts are formed from thou shall not lie, thou shall not steal, thou shall not bear false witness, thou shall not covet... Thou shall not put false Gods (profit, money, gain) before the real God.

God Bless.

[NOTE: I could try to edit this into something better, but I don't want to spend the time and effort. Here are some real feelings, raw and unedited. If they make no sense, then let it be. I'll be honest, my notes above are, shall we say... conflicted...; to me now as I read them, they just remind me of a frustration I tried to bury on Monday, the last day of January.

I do feel the need to say this though: There is good and evil. It is mixed into our lives. The internet can be used for good or evil. Books can contain good or evil. People can do good or evil. Policies can be good or evil. Businesses can do good or evil. Politics can be good or evil.

I in no way feel that any political party is good or evil. I think all political parties have a little good and evil. Anything a reader reads into the rant above about politics should know that I consider myself fortunate to have friends who want good for this country in both political parties, and I have voted for people in both political parties.

[I finally posted this Saturday Feb 12, 2011.]

Angiogram Day

(Please keep Carl in your prayers.)

Today Friday, Jan 20, 2011, is the day that Carl is having his Angiogram and procedure. And what a rough day the day has been already.

The children have no school today, just because -- I guess the reason given is that it is the end of the semester. (And Monday was a "holiday" as well.) So, ... I have to make arrangements for the children. This shouldn't be hard, but the children want to lounge around and play, not get up, shower, eat, etc. on any sort of (highly delayed) time schedule. I guess I thought that my children kind of understood that today, with their dad having a medical procedure, they might have some responsibilities beyond self gratification. The children kind of thought today would be "Saturday like" with the added bonus that there would be zero adult supervision. So, today I had children breaking all sorts of rules, well before the 'adults' (parents) even left. (The children don't consider that they have rules, they consider them "guidelines".) One rule/guideline - once you get up: Shower, get dressed, possibly eat breakfast, and if the Dog is barking for attention, put him outside. One "rule": Practise the piano before playing computer or "screen" games.


I think my children have only absolutes:

• If any sibling is breaking any sort of rule, then you should also.
• If the dog is barking to go outside, then someone else should put him outside.
• If the phone rings, (even if you are expecting a call) someone else should answer it.
• If mom starts to yell at ALL FOUR children to take a shower, you can gain bonus points by pushing others out of the way once you belatedly (1/2 hour later) decide it is time for you to comply with her request.
• If mom starts to "yell", then children should pre-emptively yell.
• If mom is yelling at any sibling, then other siblings should pre-emptively yell if she looks at them.
• When mom lowers her voice and says "Do it now", then mom is yelling. Pre-emptively yell. If you are feeling teen-like, swear as well.
• If an event is going to happen more then an hour in the future, you don't need to start getting ready.

I think I am probably being passive-aggressive here, but I hope that someday my children read this and think "That is SO UNFAIR". My Mom is not supposed to have any feelings other then a desire to make me ridiculously happy. My mom is not supposed to have any negative feelings at all. (Well, maybe at my siblings when they interfere with the world wide goal of me being ridiculously happy.) My mom is not supposed to require me to participate in any work required for the upkeep of the family, house, dog. (GOSH, isn't that what she is supposed to do? I mean, LIKE, isn't that her bleeping JOB?) 

I also hope that someday my children read this and think "That is SO UNFAIR". That is so unfair of my mom to use writing skills to vent her feelings. (We want writing to become obsolete, not used to remind our short term memories of negative things.) Writing is supposed to become obsolete, like hand-writing. Even the curriculum people know that. We keep telling mom that. OMG, DO I HAVE TO make MOM a power point? I'd TEXT her, but she won't even buy me a cell phone.) I know that the teachers have accepted that hand-writing is obsolete. The teachers don't even want to see our handwriting, because they can't read it. And neither can we. SO THERE.)


Well, I admit to my general audience here that I was stressed this morning, and my children did not come to my aid, but instead aggravated the situation. I know from personal experience that pre-emptive strikes do not work, and I know from personal experience that escalating hostilities are a natural human condition. 


Where was I. Oh yeah. Carl has a medical procedure today; children weren't cooperating; no-one wanted to walk the dog in the cold; dog poohed in the house; someone stepped in the pooh, no child wanted to find ground zero (Ground Zero here refers to the initial spot the dog poohed in.) Car stalled a couple of times; Car needed gas...

Oh, let's just fast forward to the hospital. 


The schedule we had been given was all geared for Monday's surgery. Not Friday's procedure. Where Friday's procedure is being done was not clear. Actually, since everything is computerized now, the computer printout had a column that says "Center". It has the Acronym "Radfec" Let's not spend any time helping the customer (patient) getting anything beyond a poor acronym. In fact, even the people filling out the computer form don't understand the acronym. And since the column heading 'center' doesn't really scream "Location", anyway, the data entry people will use the column 'Provider'. Perhaps that is the only field where they can type an entry. So, Provider will have "Ir 5 - FWC 2nd Fl". Yep, that will help our customer. No matter that it directly conflicts with Radfec.

You see, I have a four year engineering degree. (Not that I usually admit to it). I can speak (some) Acronym. So I know that ...

"Radfec" is probably Radiation or Radiology (two vastly different departments and locations) and fec is probably Froedtert East Clinic. (I know you readers recognized that right away.)

But everyone knows that Radiation wouldn't be located in Froedtert, it's in the connected building - the Cancer Center, so Rad can only be Radiology. Oh yeah, but not the X-Ray kind either, that is a TOTALLY different department, that's not really radiation anymore, that's, Oh never mind.

This then conflicts with "Ir 5 - FWC 2nd Fl" I believe Ir is Interventional Radiology. Well there, the customer (patient) should know right where that is. FWC (why the caps? Oh, punctuation, capitalization, all that stuff is obsolete or else it has a secret meaning that we won't bother you with...) FWC would (of course) be Froedtert West Clinic. And 2nd Fl - well second floor.

Well, F (Froedtert, for those not thinking acronym) is a big place, so the big people (administrators) labeled all the parts with East Clinics and West Clinics, even though it is a hospital, and an overnight hospital at that, so that there are a lot more then just clinics, but that's just... never mind. Anyway, (I think) Clinics are where you meet and greet your Dr, and Procedures are done elsewhere, (keep them doctors walking, it's part of our health care plan for them) but whatever....

I'm not conversant enough in acronym to know what the 5 means. I don't have advanced degrees. (Although I suspect it is the Ir room Carl is scheduled to have the procedure done in.)

Really, I should scan in our schedule. Oh well. We got lost, parked in the wrong area, walked back and forth, a lot, etc. Got Carl to where he should be. That's when we figured out that Friday's "procedure" is probably and almost bigger than Monday's surgery. Actually, an angiogram with an embolization procedure in the neck will require possibly more time than the surgery will. And Carl will need a general anesthetic, and ... But that can be for another post. Tah! (One of my friends uses Tah! instead of saying good bye...)

I hope all is going well with Carl's thing (angiogram with an embolization). They are hopefully about 2 hours into a four hour procedure.

Signed, Jeanne (Mistress of Laundry, Evil Mom).

Happy New Year, Neck Surgery Next

Happy New Year, 2011!

Carl and I and the children ended 2010 as we have been ending the Year for over a decade now - welcoming in the new year with some college friends and our eight assorted children, all born within 5 years of each other. (I think Carl and I visited each child in the hospital when they were born.)


It was a good way to close out the decade - We have been getting together for New Years Eve with these friends every year since before the turn of the millenium. (Photo above from Dec 31, 2000.)

January ushered in cold weather and more pain in Carl's neck. Multiple Doctors reviewed Carl's case, and are now recommending that Carl has a surgery to de-bulk the tumor in his neck. They considered this surgery before (in April 2010), and decided not to operate, (and at the time we were glad!). Now that the neck is giving him more trouble, the plan is that Carl will have surgery on his neck near the end of January 2011. [Update: The Surgery was on January 24, 2011] (Keep Carl in your prayers, PLEASE!)


First a special Doctor will do a procedure called an angiogram a day or two before the surgery. They will do an angiogram with embolization. Embolization is kind of the opposite of an angioplasty - the Doctors will attempt to kill and destroy the blood vessels that are supplying the tumor. [Update: The angiogram with embolization was on January 21, 2011]


On surgery day a neck surgeon will carefully remove as much of the tumor in Carl's neck as he safely can, approximately 90-95%. The surgeon will not try to remove it all, there are important nerves, blood vessels and spine stuff he doesn't want to get too close to. (The neck is a pretty important part of the body.) The surgeon will also try to cauterize (kind of burn to a crisp?) the blood vessels that are looking like they might want to supply the tumor area. A downside of removing the tumor is that the surgeon will then have to fuse several of Carl's neck vertebrae (C1 to C4, for those curious). An upside of this fusing procedure is that Carl may (with luck) actually have more neck mobility then he currently has now. Carl is in enough pain that he really turns his head very little at the moment. Carl will hopefully stay in the hospital for only a couple of days, stabilize, and then go home to recover. He will not be able to drive for 6 weeks.

I was glad the doctors didn't recommend this procedure in April of 2010, but now I really want the days to pass quickly until the surgery is over and done with. Carl has not bounced back from the last chemotherapy (which ended Dec 30, 2010) like he has from previous chemotherapies. Carl's pain is barely controlled by the medication he is taking - daily Oxicodone, with Oxicontin and Tylenol for 'break through' pain, of which there is a lot. The pain drains him of a lot of energy. It's hard to watch someone in pain and be unable to help in any meaningful way. Carl has lost weight for the first time in a year. Through this month he has been dragging himself to and from work as well, and I don't know whether to encourage or discourage this. (He probably wouldn't take my suggestions, anyway.) He basically comes home and collapses, sleeping an incredible amount, leaving me to wonder if I should wake him up to encourage him to eat, or let him sleep. I don't know the answer. When you get married they don't give you a book that tells you what do do in situations like this. I actually pray that I am not messing it up too badly.

I'm glad we made it to this weekend, (Jan 15 and 16), where Carl can rest, eat, and rest more. Next week the children have off Monday and Friday, and the two in high school have "exam week", and then we will tackle the medical procedures. Hopefully all will go well.

May your 2011 be healthy.

Writing a blog can be hard.

I've been writing blog posts for this blog for over 9 months now. Perhaps writing blog posts should be getting easier, but in some ways writing and publishing the blog is getting harder.

My posts are perhaps less frequent, and less funny. Cancer really isn't that much fun, and so when all is well I prefer to ignore it (yes, I am ignoring the cancer as much as I can.) Some of the posts feel like reruns, and while I am trying to think of some new way to write about it, the delay builds. When Carl is doing well, we try to live it up and celebrate life, and when Carl is dragging or tired we try to have a higher quality, more relaxed home life. Both of these circumstances distract from writing a blog.

I have lots of ideas, that I get late at night or while driving in the car or waiting somewhere. I have multiple posts (some even funny) written in a draft mode, waiting for the final edits. But the final edits are getting harder. I defined goals to myself for this blog, and the audience I was writing for. Trying to keep up a level of writing, and improving it, gets harder. A blog is not a book, carefully planned start to finish. Sometimes I am not sure how much I want to say. This blog does not reflect my every feeling along the way.

Sometimes a post started in between chemotherapy treatments gets pushed aside because of the next treatment, and then the chronological nature of the blog makes returning to the started post seem awkward.

My photography was meant to be a large part of this blog, but the extra steps the photography requires has prevented some of that.

And then there is the real life that intrudes. What do I do about that? This is a blog about a journey my family is on. An unfortunate cancer journey. So what do I do with unexpected side trips?

My 89 year old father passed away Oct 4, 2010. This side trip is too major to be ignored, and also too big to be included. My thoughts and feelings about my father's death are obviously on my mind as I think about cancer and it's possible outcomes, about the blessings of a long life fully lived, or even a shorter life well lived and full of blessings. My thoughts and feelings about my father's death are on my mind when I think of my dad's multi-year medical decline, and my husband's far shorter medical struggle and my hope and prayers for it's multi step conclusion - first control of the tumor, then remission, then "cancer free".

In any case, I am not able to process how I should handle my father's death in this blog. So I guess, other then mentioning it here, I will leave it out of the blog for now. My next post after this one is already written. I'll try to post it a day or two after this one. But I felt I could not post my next, already written blog post today without mentioning what I mentioned here in this post.

I should wait before I publish this blog post, edit it one more time and try to make it a compact coherent piece, rethink it, redo it... but I don't think I know how to edit this any more to make it more coherent. So I won't wait, anymore, for now.

Friday homecoming.

Friday, August 13, 2010, I picked up Carl from Froedtert hospital around 4:30PM. His 5 days of inpatient chemotherapy was over for now. Friday was a beautifully hot summer day, with the emphasis on hot. I had the children scattered about so Carl could come home to a relatively quiet and relatively clean house and go crash in bed. (We were dog-sitting Cali. Two dogs happy to see Carl isn't exactly quiet.)

After getting Tom, Nathan and Miranda to the Logemann Center's Friday the 13th party (with costumes), I tried to clean up the house.

• The kitchen & dining room looked like four teenage raccoons had eaten whatever stuck their fancy, leaving unfinished food and wrappers everywhere. The half eaten poptarts alone could feed the hungry children of a minor African country.
  
• The living room looked like four teenage poltergeists had had a slumber party for a week, leaving bedding and clean and dirty clothes strewn about, with the occasional food items tucked here and there. (Empty bowls and cups.)
  
• The foyer, car, and bathrooms were decorated with wet (car-foyer) and dry (bathroom towel bar, overloaded) swimwear and towels.
  
• Shoes and water shoes were mounded in the foyer like an Indian effigy mound, perhaps as a monument to the beta fish (Shannon) that died during the week after a month of listlessly sleeping on it's side in it's bowl, and then fluttering it's fins apathetically for a minute or so whenever I shook the bowl to see if he was dead. I think it was the chlorine smell from the pool gear that eventually did him (Shannon) in. (Colorful beta fish are usually male, in spite of whatever your children name them.)

Anthony discovered that the local gas station Kwik Trip will trade his lawn mowing money for glazed donuts, milk shakes, and chocolate pop-tarts, all items I pretty much refuse to buy. He generously bought some for his siblings, and left milk shake containers everywhere - car, garage, basement, kitchen - everywhere except the kitchen garbage can. We discovered that the dog we were babysitting (Cali) will eat mini carrots from the ice cream bowls if left near the XBOX controller - It probably looked like a dog food bowl to Cali, who I believe sees only in black and white.

I cleaned up the house and brought Carl home. Then, I went to pick up three of the four children. (Anthony was already home.)

I had planned that Carl would come home and crash and rest in bed, like he has on other weeks after inpatient chemo, but the summer weather, or the extra light out, or whatever, made Carl come home with extra energy and a desire to not lay in bed (because, after all, that is what Carl has been doing for the last 5 days, 20 hours + a day) So, while I went to get three of the four children, Carl made a meal for Anthony. After the children were home for 20 minutes, and had snacked, the house pretty much looked like it had before I cleaned, only now there were costumes as well in the living room.

We all went to bed that night, the first time in a week all of us were sleeping under one roof. That was nice.

Today, a Day like any other Day

Well, today pretty much sucked.

It's not really like Carl and I were looking forward to Carl's chemotherapy. I was just glad it wasn't going to be 5 days inpatient chemotherapy. I figured that one day is better then 100+ hours in the same small room, staring at a wall. But Carl has to go through it, get the needle sticks, taste the bad tastes, and feel all the weird sensations that a person feels when they are trying to poison lots of cells in your body. Carl is the person for whom it "sucks the most". I was trying to be pleasant, but perhaps I appeared too cheerful this Monday morning. Carl made cracks about me getting ready to go, and then was clearing out his car and trying to change the tires. (Literally, I believe this morning, Carl was planning on taking the snow tires off his car, No Lie.)

When you are mad at situations beyond your control [Ex. 1: You have cancer; Ex 2: Your children are not preforming academically the way you would like; Ex. 3: 60-100% of the people you live with are disorganized, including you; Ex. 4: You can't find your torque wrench], but bottling it up, why not be grumpy at the person who has been with you at all of your low and sucky times in the last 20+ years, and who is probably the cause of some of those times, and who you most associate with all of those low and sucky times anyway, because, well, she is always around. [Why won't she just GO AWAY. And when she does GO AWAY, things don't get better, and that's her fault to...] (She might be around during some of the better times as well, but that is INCIDENTAL.) (Accidental?)

I really feel that I am blameless today, and that Saint Carl was gunning for a fight. There can be no doubt that in our relationship, Carl is the more easygoing and giving person. Today, though, I was being calm and patient, (that's easy once the four children are off to school), Carl was trying to provoke me. And he got grumpier when I didn't let him. I probably did the worst sin of all - I tried to be pleasant because I FEEL BAD that Carl has to go through chemotherapy today.

Here is an example of Carl trying to make me irritable. When we finally leave the Cancer Center, Carl and I get in the car. Before I even back the car out, I put the clutch in, and Carl is like "Oh My God, I should drive home." Hey, like I TAUGHT Carl to drive stick shift, in MY CAR, 20+ years ago. And, like, if MOITRIN and BENEDRYL say don't operate heavy machinery, (a car) after 2 little pills, then I think, PERHAPS, full dosages of intravenous ondancetron, dexamethazone, and the fun little poison call GEMZAR might have similar restrictions.

Carl's chemotherapy appointment was scheduled for 11:30. When we arrived, they gave us a pager and told us that they wouldn't be calling us for at least 40 minutes. We headed down to the Froedtert cafeteria and ate lunch. Someone wonderful had given us a gift card to the lunchroom, which we have slowly been using. Lunch was actually ok, though we ate fast because of the pager. Sometime after 12:15 we are in the room.

I've mentioned before that Carl has a port for IV's, and that sometimes (frequently) the nurse will have a difficult time getting blood to draw back into the line, which they need to do before they can start the IV. So, of course, today there was no chance that we would get the blood to draw back, and the nurse did not seem to inspire us with confidence once she experienced this. The nurse used saline, then heparin, then more saline, and then finally got a TPA dose defrosted and used that to get the line cleared. Using TPA means a one hour wait. Carl's IV chemotherapy started at 1:50, when the scheduled time was 11:30. So, this means, the two hour chemo will now end after the children are out of school. Whatever. I make phone arrangements.

So eventually I get Carl home, and I get the kids home. But now I am getting a bit annoyed. So, when you are mad at situations beyond your control [Ex. 1: Your spouse has cancer; Ex 2: Your children are not preforming academically the way you would like; Ex. 3: 60-100% of the people you live with are disorganised, including you], but bottling it up, why not be grumpy at the children who have caused, and continue to cause some of your recent low and sucky times in the short span of their lifetime.

Then Tom goes for an unauthorized bike ride on the highway. Nathan and Mir and I go out to find Tom, because someone should. We can't split up because only I have a cell phone, Carl misplaced his, and he always shuts it off so you can't call it to find it. (And besides, I really don't want Nathan and Mir to go along the highway without me.) We find Tom, send him home, but now Mir and Nathan want a fun bikeride. The children stopped to play, and I was looping back, and they don't even notice that I take a spill on my bike, crashing in a muddy ditch. Carl mows the lawn in anger because he knows I won't think it's a great idea after chemo, and he is still trying to irritate me. The children have a huge water fight with the hose and drag hundreds of grass clippings, maple tree helicopters and water into the house. Then Carl keeps the kids up past their bedtime trying to find summer clothing that fits, even though I think he should go to sleep. Finally, at the end of the night, the kids throw the wet laundry down the laundry shoot mixed in with the dry laundry, so now that laundry could rot and mold and smell. (They are supposed to leave wet stuff in the bathtub, or better yet, hang it in the tub to dry 1st, before getting it into the laundry shoot.)

I don't make this stuff up. I am not that creative.

This will lead me to another post sometime, the beauty of the word "whatever."

An overdue update.

It's now the middle of April, and I am long overdue for an update.

Carl last got treatments from March 1-March 5, 2020. At that time he had inpatient chemotherapy. Then the Doctors suggested it might be a "good time for a break". Anthony and Carl had birthdays, on March 19 and 25 respectively. Easter (April 4) and Easter break for the children came and went from April 1th to April 11. Miranda turned 11 on April 11, 2010, and we went to Chicago for the weekend to celebrate her "Golden Birthday". School resumed for the children, and our oldest Tom turned 16 on April 14, 2010. On Friday we celebrated my nieces 16th birthday (She's 16 today, April 18th), and today we celebrated my father's 89th birthday, which is tomorrow, April 19th, 2010. [Deep breath here...]

I have pictures and photos from these events, and while I someday may post them, the idea of keeping this blog "chronological" at this point seems daunting. (I still haven't posted Carl's birthday photo yet, either. I'm not sure it's been down loaded from the camera!) I can't always play catch up, I'll just jump ahead.

Medically, Carl enjoyed a long break from the hospital. So the last month he has been healthy and active, able to eat salads and from salad bars, deli sandwiches and all sorts of other treats forbidden when the white blood cell counts may be low. He has been driving himself to work everyday. He's started to grow fuzzy hair. On April 8 he had to get his port "flushed", a procedure to clean out the port when it hasn't been used for a while so that protein deposits don't build up and block the tubes. On April 12, and April 14th test and procedures started for the next treatment phase, which will be radiation to the leg area for 15 days with concurrent chemotherapy. We have enjoyed a sort of respite from the cancer treatments, which will now start again with a vengeance.

Tomorrow, Monday, April 19, 2010, Carl will get a short chemotherapy dose, and then starting April 20, 2010 and for the next 15 successive weekdays Carl will be getting radiation doses to the leg to attempt to kill the tumor there. The chemotherapy drugs selected will interact with the radiation to maximize the effect of the radiation, as well as treat stray cancer cells. I so hope that Carl's cancer is miraculously sensitive to the radiation, and that the cancer cells die at a rate, and so completely, that the Doctors are astonished. Wouldn't it be great to astonish the Doctors with a miracle? We pray for this.

The Doctors don't rule out miracles. This is a step in a treatment series that will continue throughout 2010.

That idea I find a little exhausting. I find the weekend and day before treatments begin highly stressful. I want everyone to be having a great time, when I am still dealing with 6 personalities and (effectively) 4 teenagers [OK, so the children are 16, 14, 12 and 10. I exaggerate...] I find it a little hard to be happy and sparkly, or even relaxed and enjoying the good moments. I want to celebrate, have the children have friends over, and keep everyone happy, because the treatment weeks get a little rough. And this three week radiation will be another new challenge, slightly different, with different possible side effects and dangers.

Carl, my amazing guy, has a great and remarkable calm as my stress levels start to jump... Good thing I married him!

I am finding it hard to word this blog post elegantly, or even well, so I guess I'll just send it off into blogland and get on to the next task. Thank you so much for your prayers, your thoughts and your support, the meals and treats. I will need them again in the weeks (and months) ahead.

Smile, God Loves You, and Peace.