I had felt bad that I didn't update the blog in April, and now May is nearly over. So now I really feel pressured to post something. It's been a busy 2011, so I will give a relatively non-medical update of April, at least.
April started well. Carl was feeling fairly good. Carl was actually able to drive to work again on Friday, April 1, 2011. (No fooling) . He had been counting the days until he could drive again, and it was now six weeks after Carl's second neck surgery. The Dr's. gave him the go ahead.
On Saturday April 2, 2011 Carl and I got to see our very talented niece be Carlotta in the musical "Phantom of the Opera" at Marquette High School.
The photo below is from Sunday, April 3rd, when Carl, Miranda, and I went to a show at the Art Museum.
The children's spring break vacation from school started on Saturday, April 2 to Sunday, April 10, 2011. Starting Monday, April 4, 2011, Carl was happy to drive off to work and leave me at home with the children.
As spring break progressed, Carl's left knee and the area just below the knee started to bother him. By Thursday, April 7, 2011, Carl's left knee was painful enough that he had to start using crutches to walk. The children's spring break vacation continued, though, with Carl escaping to his work when he wasn't at something medical or recovering from something medical.
On Saturday, April 9, 2011 we 'left town' for the baptism of Cooper Schmidt, my niece's 1st baby, and the first grandchild in my family. We took the family picture at the beginning of this post before Cooper's baptism in Green Lake, Wisconsin.
Here is Carl with Cooper. Carl is now a Great Uncle, but we already knew that before Cooper was born.
After the baptism (the very next day, even), we started celebrating Miranda's 12th birthday. We celebrated Miranda's birthday several times, actually. (Her actual birthday is April 11)
On Wednesday April 13, 2011 Carl had a small surgery for a hernia repair.
On Thursday, April 14, 2011 we celebrated Tom's 17th Birthday.
On Sunday April 17, 2011 we celebrated my niece's birthday, and Tom's and Miranda' birthday again!
On Monday April 18, 2011 we finished our taxes.
Sunday April 24, 2011, Easter came, and we decorated Easter eggs and more.
We saw both side of the family on Easter - lunch with my relatives, dinner with Carl's relatives.
On Monday April 25, 2011, Carl's neck was swelling up.
On Friday, April 29, 2011 we went and watched a play at Homestead High school that Anthony was very active in. Anthony was the lighting stage crew manager, and had been working on this play extensively through out April.
Many other things went on in April 2011. Almost every weekday in April, Carl got a dose of radiation to the neck.
So, as I said before, April was very busy.
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.
Wow. Is today only Tuesday February 15, 2011? The weekend seems weeks ago... Yesterday (only yesterday, really?) was Monday February 14, 2011, Valentines Day, which we celebrated by taking Carl to Froedtert Hospital for a surgery - for "Cervical Device Failure".
"Cervical Device Failure" - I just had to google that. We (almost all humans) have cervical vertebrae (vertebrae which are in the neck), and almost all women have a cervix which can get cervical cancer, which is a cancer south of the belly button. NO WONDER Doctors have to go to school for so long, these very different parts share a common name. How confusing. Can you imagine opening a catalog for Cervical devices? Spine things and cervical caps all on the same page. ( But I digress.)
We were scheduled to come to the hospital at 8:30AM for a 10:30AM surgery, but a nurse called and asked us to come earlier. Apparently one of the surgeries before us was going to be a no-show. Did they cancel out or did they die? We could only guess. [4-22-2011 note: Wow, in retrospect as I re-read this in April, that comes off very harsh. The humor did not work. I never for a minute really thought the patient might actually have died.]
Carl's procedure started at 9:45AM, and the surgeon's first incision started around 11:45AM. Before that the medical team put in a breathing tube through the nose while Carl was awake, put Carl out with a general anesthetic, established more IV's including something called an arterial IV, inserted a catheter, did positioning things and X-rays and more. I guess that's why surgery is called an invasive procedure. The surgery went longer then I expected. It wasn't over until about 2:30PM when Carl was moved to the recovery area, where the medical people keep him until they think he is responsive and stabilized, usually about two hours.
I went and shuttled my children around two counties, and came back to the hospital shortly after Carl was moved to his room in the spine injury area - 5SE room 6. They were giving Carl morphine (4mg) as I arrived, and giving Carl more morphine (4mg) as I left two hours later. Carl rated his pain at about a 6 on a 10 point scale. Carl walked several steps to earn the reward of the catheter being removed.
Interestingly enough, Carl's memory starts later. His memory starts with him waking up after the catheter was out. He didn't remember me being there, but then (when reminded) he remembered me saying to the nurse that I was going to go gather my children from a two county region.
I picked up three of the children from a nice Valentines Day dinner at their Uncle and Aunt's house (Thanks guys!), and then took them home to do homework and get them settled into bed. Miranda in particular missed her Dad, but I think we all wished Carl would have been home. Happy Valentines Day...
On Tuesday February 15, 2011 when I went to see Carl, he was mostly exhausted and tired. The nurse said he had rated his pain around 3 on a 10 point scale, where 4 was tolerable (to Carl). Just before I left Carl at around 2:00PM, Carl said he didn't really have pain, at the moment nothing "hurt" him, but he was drained of all energy. The procedures in previous weeks had drained his energy, and now what little energy he had remaining was gone. He didn't watch TV or anything, and when he talked he kept his eyes closed and didn't move or sit up. I brought him two pints of blueberries, and he ate one pint while I was there, mostly without opening his eyes. He didn't want any phone calls or any visitors, he just wanted to rest.
While I was there, I had 3 questions I was trying to ask him. 1. How do you feel? 2. How did he feel the surgery went? and 3. Did the surgeon come and talk to him? During the five minute time we were trying to talk about these three things, we were interrupted three times. The nurse came in, the pharmacist came in and 'interviewed' Carl, and someone else. (Maybe the nurse returning with something?) It was incredible. The pharmacist interview took probably 25 minutes alone. (Starting with the questions are you allergic...)
The surgeon came by and talked to us for a (very) brief time. He feels the surgery went well. We hope he is right. The surgeon did not see any sign of new tumor growth, which is really nice to know. The Jan 24 surgery was important (to me) for removing 90% of a not controlled tumor. In that alone, the first surgery was very successful.
I guess the important thing about today was that Carl's pain was under control, momentarily at least, and that he was already eating. After the last surgery he pretty much didn't eat for 2.5 days. So, Carl appears to me to be in significantly better shape after this surgery then after the one on January 24, 2011. Maybe he will recover faster.
Carl should be coming home tomorrow. Then he will be able to get rest. You don't get rest in the hospital.
Please keep Carl in your prayers, and hug your loved ones for Valentines Day.
Today is Saturday, February 12, 2011, and I am finally writing to bring this blog up to date. The last chaotic jumble of posts can be referred to or ignored, but I'll try to recap here.
Carl's Angiogram with embolization procedure done at Froedtert on Friday, Jan 21, 2011. It was a long day and a long procedure that attempted to kill off blood supply to the tumor in his neck, and the Doctors felt it went well. Carl remained in the hospital through the weekend, and on Monday, Jan 24, 2011 Carl had a surgery to de-bulk the tumor in his neck and to stabilize his neck. Monday was a long day and a long procedure, and the Doctors felt it went well. Carl stayed in the hospital a few more days and came home from the hospital late Wednesday, January 26, 2010.
Carl has been mostly staying at home and trying to recover from the surgery. He has been in a lot of pain at times, and takes a lot of pain medication. Carl takes 60mg of Oxicontin, (a long acting pain pill) twice a day, and he takes 10 mg of Oxicodone between these doses for break through pain. He takes a version of Valium to relax the muscles, up to four times a day.
Carl didn't have to return to the Medical complex until Monday February 7, 2011, when he had three appointments: 9:00AM with the Oncologist, 10:20AM with the Radiation Doctor, and 11:30AM with the wound check people. The wound check lady removed the stitches in the back of Carl's neck. The meetings with the Doctors were surprisingly unenlightening. (A friend once told me that with cancer you have to remember that every Dr. meeting is not going to answer all your questions, or even tell you a whole lot. There is no great answer at the next appointment.)
On Tuesday, February 8, 2011, Carl went to work for about four hours. He felt good about getting out of the house and going to work. (I drove him both ways. Carl won't be able to drive for weeks)
On Wednesday, February 9, 2011, Carl went to work in the morning, and then I drove him to a 1:10PM CT simulation appointment in radiation oncology.
On Thursday, February 10, 2011, Carl had a 9:00 AM MRI appointment in radiation oncology. Carl's pain, usually bad, was even worse today. It was wincingly bad, and so while Carl got his MRI I tried to get appointments to address the pain. The Oncologist could see him at 12:30 that day, but recommended we contact the surgeon. At around 10:00 AM I call the surgeon, and they made an appointment for Carl to see them at 12:00 noon the same day. We were in the surgeon's office at noon, and the surgeon reviewed the mornings MRI (which were taken from angles appropriate for Radiation planning, not the angle the surgeon was used to). The Surgeon then ordered an X-ray which Carl had 20 minutes later. At 12:40 we were back in the Surgeon's office. He studied the X-ray and indicated that the mechanical parts placed in Carl's neck were not in the right position, a plate had slipped and a screw was out of position. He said we should have that fixed in surgery on Monday, was that OK? Carl just kind of stared at the guy numbly. The surgeon was good. He said let's schedule the surgery time to hold the time slot and you can decide later whether or not to do the surgery. I said, Carl, your going to go along with this, right? (and probably some more things...) and Carl agreed he had no real choice. (We could edit that to "Carl agreed"... but I am not sure either edit defines the real moment)
So... Carl will once again undergo neck surgery, this time on Monday, February 14, 2011, Valentines Day. Sigh....
The rest of Thursday afternoon included a pre-op appointment and expediting a CAT scan through both insurance and the hospital, and we were home by 4:00PM. Carl went home in pain, (not really numb, was he?) and so both Carl and I will just keep going.
Carl is like a exotic sports car - He's finicky. He needs a custom tune-up.
Tuesday, Jan 25, 2010 Carl was at Froedtert Hospital all day recovering from yesterday's surgery. Carl is exhausted, and it hurts him to move, even with the pain medications he is taking. Talking is 'draining'. Carl lies really still in bed after finding a "comfortable" position. Carl "graduated" from PT (Physical Therapy) this morning after he walked, climbed stairs, and got in and out of bed a couple of times for the physical therapist. Carl's neurological surgeon (spine surgeon) came in a talked to him for a few minutes, and reiterated that the surgery was very successful. Carl didn't want any phone calls or visits, although he did get to talk to his dad for a few minutes on the phone. He didn't watch TV, and mostly slept. Recover Carl!
A friend who has also had neck surgery told me that she remembers being given the benchmark that for each hour a person is out under a general anesthetic, it takes 1 week to recover, and that it is preferable to separate general anesthetic procedures by a week. I think avoiding a surgeon is probably preferable. I do not want to try and calculate how long Carl was out under general anesthetic.
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.
November was kind of a pain in the neck for Carl. This is a pun, because November is the first time Carl was having significant pain in his neck since, maybe, February 2010. The Doctor's reviewing his PET scan decided that the Irinotecan / Vinchristine chemotherapy was not working. So, on Monday December 6, 2010 Carl was once again checked into Froedtert Hospital for inpatient chemotherapy. This time he was given Ifosomide, a drug he has had before, and a new for him drug (something like Itopocide, I'll correct this when I get the name right). The Doctors also took this time to help get Carl's pain under control.
Carl was in Froedtert from Monday December 6, 2010 to Friday December 10, 2010, getting out after 8:00 PM in the evening. What's new at Froedtert? New Chemotherapy Pumps. Ooolala. (See photo below)
This is a kind of boring update.
Here is a photo of our family from the Thanksgiving weekend. Notice that Carl has some hair. The extra dog on the right is Rosie whom we watched for a couple of days. This is a fast snapshot, not a portrait, no one combed their hair, (Carl hasn't combed his hair for months), and I didn't take the photo. I can't believe I am adding this photo in, except this post is SO dry and boring. I do like Anthony's foot, I think it is cute.
There shouldn't be any chemo from now until past Christmas, and Carl should be feeling fine for the Holidays. Carl continues to work at his job pretty much full time when he is not at the Doctor's or getting chemotherapy.
Thanksgiving was great. When you have 4 days off, like Carl did, you can fill the days with lots of relaxation AND getting together with friends AND movies AND TV AND cooking. Perhaps a silver lining of Carl's cancer is that we are getting better at enjoying the weekends.
Carl's 'hobby' of cooking has reached new heights in 2010, and the whole family is glad. So, over the Thanksgiving weekend Carl made the Thanksgiving dinner. He made a turkey awesomely, used his new super cool meat thermometer, etc.
Carl's neck has begun to really bother him. At the beginning of 2010, Carl got a prescription for Oxycontin, 200 pills. Until the middle of November, Carl rarely had pain the required him to use a pain killer, usually Motrin or Tylenol. But in November, Carl started taking more pain killers, including prescription pain killers, and over the Thanksgiving weekend his neck was in pain almost every day.
On Monday Nov 30, 2010, Carl had a PET scan to see how the new Chemotherapy (Irhineotecan and Vinchristine) are impacting the tumor. On Thursday, Dec 2, 2010 Carl went to the Oncologist. He was scheduled to start a 3rd round of Irhineotecan and Vinchristine. But the Oncologist said the PET scan indicated that the Irhineotecan and Vinchristine was not being effective, and the neck tumor is showing metabolic activity. DXXM. I was hoping the neck pain was because the tumor was dying, not thinking about growing.
This means goodbye to these 'nice' chemotherapy drugs that let Carl's hair grow, and only take 2 days of chemo infusion every 21 days. We had to schedule new chemotherapy drugs, and they will take longer to infuse. But chemotherapy is better then no chemo, so....
The Oncologist gave Carl a new pain pill plan, and on Friday Carl's neck was already in better shape, pain wise. Wednesday Carl's pain was so debilitating that I was really worried.
With the change in plans, we got to have a nice weekend of getting ready for Christmas, eating at a really good Chinese restaurant (Yen Chings), and shoveling the first snow this winter, visiting the Domes and Discovery World, and more. I hope you enjoyed your weekend and Thanksgiving.
