One more worry

As if I didn't have enough to worry about, now I can add swine flu to my list. Progresssion of disease is not always the reason cancer patients die. Frequently they succumb to other diseases because of a compromised immune system from chemo. Or they die from malnutrition. I have to be protective of Jim which is why I had him wear a mask last time he was in treatment. Although it probably doesn't do much good in protecting him from airborne germs, it serves as a reminder for others to stay away from him. He doesn't need contact with sick people. No hugs, hand-shaking, or God-forbid--kisses. That will be difficult for Campbell who has to have her "hugth and kitheth" every day.

I hate to travel to Houston which is so close to the outbreak and hate to travel in a plane--a flying germ incubator. Maybe Dr. Rios will tell us not to come but to take our next treatment in Memphis.

Jim is feeling well today except for racing heart and agitation--possibly from the steroid. He also has had insomnia the last few nights. Still preferable to the other side effects he's had.

At the Edge

Today I crashed. The last few months have caught up with me.

We watched Campbell today as we do every wednesday. She entertained herself--dressed up in her scarves, jewelry, wig, and spike heeled shoes and was as good as a three-year-0ld can be. Very easy day as far as baby-sitting goes.

She and I were going to the library, Target, and Children's Place so that Jim could rest but when we finally got ready to go, we didn't have a carseat. Chris had forgotten to leave the seat which they borrowed yesterday for Tara. Chris is understandably distracted because his grandma died yesterday after a 7 month battle with pancreatic cancer. He and Ashleigh are trying to get ready to go to Shreveport for the funeral.

No harm actually done because CAmpbell was happy to stay here and play but when my plans were thwarted I realized I am hanging by a thread. Jim went to West Clinic for bloodwork. (Dr. Rios called last night at 10 and this morning at 7.) He prescribed a different painkiller and ordered a blood panel.

I ran the dishwasher and the machine stopped mid-cycle. The 23 year-old artifact gave up the ghost. We had long been expecting the demise but still it is hard to let the old gal go. The thought of buying a new one nearly did me in, too--another indication of my fragile state-of-mind.

Then I put Campbell down for a nap, thinking I would get a nap at the same time, but Campbell had a different idea. Everytime I was about to drift off, she said, "Gigi, I'm not sleepy." Neither threats nor bribery convinced her. She took the bonnet off the teddy bear and put it on her head; she got out of bed to get her water; she sang songs. Finally we gave up and got up.

By then Jim was home from the doctor waiting for the computer man. Yes, the computer was down in addition to the air conditioner and the dishwasher. He said please go upstairs and take a nap. This is where the caregiver guilt kicks in. I tried to sleep but kept thinking, I can't leave him alone down there with all these problems. He's the one with cancer. He needs to rest.


I remember having these same feelings 6 years ago. I don't want to be the responsible party. I want to be the irresponsible party. I don't want to make any decisions. The problem is I am not willing to reliquish control and let someone else make them. The universe is conspiring against me. Even the appliances are in revolt. I'm sure the washing machine is planning a breakdown too but first I intend to have mine.

Chemo side-effects

Jim is now feeling the effects of the chemo that he took on Thursday and Friday. Last night he had restless leg syndrome--probably from the Decadron. Just about the time he would fall asleep he would jerk to attention. The drugs in the preinfusion must be doing their work because he has not been nauseated. Yesterday he was pretty cranky--with good reason. It has to be difficult to feel crummy and know that this is just the beginning of a long ordeal.

The air conditioning is not working in the downstairs addition (bedroom) and the repair man can't come until Monday. Last night wasn't bad. We can go upstairs if necessary but we both want to sleep in our own bed after sleeping at the Holiday Inn for 5 days. In 2002 when we came home from the hospital, I was surprised that the world hadn't stopped in light of Jim's diagnosis. WE had leaks and varmints in the attic and other problems that nearly broke the camel's back. This time I was better prepared to deal with minor aggravations knowing that life goes on.

I'm a little rusty on my caregiving techniques. He planned to go to church this morning but I didn't think that was possible. Then i remembered that I needed to take charge of the decision. So I said, "I really don't want to go to church tomorrow. I'm just exhausted."THis relieved him of the responsibility of making the decision.

This morning he was glad because he felt worse. He has been sleeping all morning on the screened-in porch, feeling generally miserable--flu-like aches and pains. He ate a little dry cereal for breakfast but has no appetite.I'm so glad we added the porch two years ago. He can watch TV out there in the cool breeze and feel as if he's outside.

I'm taking up the slack--gladly--realizing how much Jim does around here. The trash, unloading groceries, rnning errands, going to the post office, pumping gas. When he was working we had a very traditional division of labor. I pretty much did the household tasks and he brought home the bacon. Since he retired he pitches right in with the work here. I'm spoiled but then I have always been. I've never taken him for granted.

Guess I'll go to Lowes and get some plants--always a good pick-me-up.

Hiccups

4/24/09

Jim has had the hiccups for almost 3 hours. This happened last time when he had chemo. Hiccups are seldom listed as a side-effect but many patients complain about them especially with the platinum based drugs. Actually they are probably caused by the dexamethasone that he takes 2 days before and 2 days after the chemo.

Last time (2003) I was computer illiterate and didn't check Google for solutions. I just did that; he tried the old sugar remedy--HI has sugar packets in the room--and voila! Hiccups gone! We'll be taking sugar packets on the plane tomorrow.

Do any of you have other solutions should that fail?

And fail it did. When he lay down to sleep the hiccups returned in full force. The sugar didn't help this time. In about an hour they went away.

Walking in Houston

Nothing much to report actually. We got back to the room at 4. Jim rested and I walked to Rice village to eat and bring back food for him. So far so good. No nausea. He is tired, of course ,but this was a long day. Tomorrow will be shorter.

Walking to Rice village tonight i thought again about the diversity of the neighborhood--making it such a great place for a stroll. No two houses are alike. Ultramodern sits next to a stone cottage with a picket fence. Palm trees dot the yards of spanish style homes. Live oaks stretch from yard to yard. Crepe myrtles line the walkways. Each house is an expression of the people who live in it. One I love has cobalt blue doors with cobalt planters on the brick front porch. A paint choice that would elicit a "What were they thinking?" in Germantown seems perflectly appropriate here.

Hindu goddesses peer across the fence at a statue of the Virgin Mary. Hispanic nannies push Asian babies in fancy strollers. African American toddlers play in the yards with Hispanic children.

Even the pets are a hodgepodge of breeds. Fat tabbies and sleek Siamese lounge in the sunny driveways. In the evening senior citizens walk little lap dogs and generation X'ers are led by the designer breeds--Schnoodles, and poodles and Labradoodles.

Isn't diversity wonderful? Not that we really experience much of it. Most of the people I spend time with look and think the way I do. When I was thinking of starting a book club, I told Nicole I would like to have a diverse group but my friends are a pretty homogeneous group. Her suggestion was to find an Iranian lesbian attorney. Bound to get some different ideas there--all in one invitation.

Today when I was walking by myself I thought how much I missed Jim saying, "Do you have your cell phone? Where's the room key? Watch out! You nearly stepped in front of that car." Just as he would end up with a port-a-cath in his ear without me, I would never get on the right plane or even in the right car without him following me around.

Wouldn't the world be a dull place if we were all alike?

chemo

4/23/09

Jim was uncomfortable last night--aches and pains and some discomfort in the area of the port-- but he slept well. In spite of his bravado and positive outlook, I know this is getting him down. No one wants to take chemo again. And as the spokesperson for all of those brave and silent suffering patients, my job is to tell you that whatever they say, this is no easy journey.

4/23/09

Some regimens might be relatively easier but none are easy.Jim is taking his pre-infusion now--Decadron, Zofran, Benadryl They should begin the other drugs--one at a time--shortly. The nurse said he will probably be here for 6 hours. Tomorrow should be shorter--3 hours.

Dr. Rios answered some questions for us: 1.)Yes I will be giving Jim Procrit and Neuposgen shots again--i guess beginning next week. Pray the insurance pays for this. Dr. Rios said he didn't foresee a problem. 2) He will get 4 sessions of the 4 drugs, once every 21 days--then a PET back here in Houston to see if the tumor is shrinking. Start praying now. With every drip that goes in his body I am praying that it goes directly to the ttumor and any others that have begun and obliterates them. 3) Pray that he doesn't have a problem with clots--a common side effect with the Alimta or maybe Avastin iget them confused. 4) He is going to get us some phenergan for breakthrough nausea but the pre meds they use now are much stronger than in 2003. Then the effect for nausea was only 24 hrs. Now it is 5 days.

I am going to get something to eat. I hate going without Jim but 6 hrs is too long to wait and I doubt very much that he will feel like eating tonite.

port-a-cath

4/26/09

Jim got undressed and into the bed. found a vein to hook him up to the mild anesthetic, asked all the pertinent questions, and took him up to the "room" to put in the port. Now, after talking with those who have had a port inserted recently, I expected this to be a drive through procedure. jump out of the bus, run into E.R., get a shot of painkiller, pop the port in and head to Le Peep for our breakfast. Not quite.We have been here since 7 and they just took him up at 10.15. Said the procedure will take about 45 min, then an hour or 2 to be certain there are no problems with bleeding. The port has to be inserted on the left side since it was on the right last time, which is a little more difficult.

at the hospital

4/26/09
Great trip. Thanks to the ludwigs, we were able to fly directly from Memphis--no getting up early, no three hour drive, no layover in Atlanta. Thanks again.Getting up before the sun is for the birds--literally. We joined our fellow sojourners on the shuttle bus at 6.30 A.M. Ten people different shapes , sizes and colors all headed to hospitals in search of a medical miracle. First stop MD Anderson, next St. Lukes, Methodist, all places we've been on earlier trips. Last stop Hermann Memorial a new one for us.Admissions was ready and waiting for us. Good sign. Insurance--check. Next stop "Procedures." ""Do you need someone to take you? asks the friendly and efficient 'admittor.'"Oh, no," I reply quickly, thinking Jim is capable of walking. Twenty minutes later, hopelessly lost, we back track to admitting. Or we tried but in absence of bread crumbs we couldn't find our way back. Finally after 30 minutes we found the room."Sorry we're late," I tell the nurse in procedures but we were lost."Oh, It happens all the time since the took the sign off the door. I keep telling them they need to replace it."might be a good idea or tell the admissions people to stop directing us to the room marked "procedures.".
Posted by Cyndi at 9:53 AM

Caregiver Narcolepsy

I can't get enough sleep. When Jim was first diagnosed and went through surgery, chemo and radiation, I had the same problem. It lasted for a year. I actually made appointments with the Dr. believing there was some physical explanation for my fatigue. He discovered that my hemoglobin was a very little bit low and put me through the battery of tests. No underlying problem. I took iron supplememts but I can't really say they helped.

Now, after several other stressful periods, I have decided the need for sleep accompanies the caregiver job.
I can sleep (and do) for 9 hrs straight, take a 2 hour nap, and still want more! I hate to waste so much time--at an age when time is at a premium.

Bad Hair Year

After years of trying to find the hair-stylist with the magic wand, I am returning to the tried and true stylist I divorced five years ago. I left her for a younger woman hoping for revitalization through a more modern hair style. The experiment was a dismal failure.

I don't know whether the reconciliation will be successful, but I have to give it a chance. I'm crawling bck with my tail between my legs, begging her forgiveness, and hoping she will take me back.

Although my friends keep telling me my hair looks good, I think I look like a poor imitation of Adam Lambert sans the black dye. Adam is prettier , of course.

My appointment is today. I'm hoping for a magic transformation.

A Grave error

This happened a month ago on our way back from my husband's Dr. appointment in Houston. We stopped at the Grove—airport ice cream shop—because I needed some more comfort food after a stressful week of scans, appointments and bad news.

I ordered my hot fudge sundae, took out my money to pay, because I had handy cash, told the woman behind the counter I was paying for Jim’s who was standing behind me (actually beside me.) She looks a t Jim and says in heavily accented English, “He your son?”

I wanted to throw my hot fudge sundae into her smiling face but instead I replied icily, “He is my husband.” To which I might have added: my 63 yr old grey haired husband with stage 4 cancer.

Jim has tried his best to explain her grave error. “A cultural thing,” he says. “You know you paid for my ice cream so she thought I was your son.” I’m not buying that.

He tries again. “The poor thing was visually impaired. Did you see her service dog lying behind the counter?” NO.

One last try. “After you left, she said, ‘I make bad joke.’” No, she make near-fatal mistake.

I told you all I’m looking bad, in need of a new hair style or makeover. The only positive explanation I can come up with is that she thought he looked 16 and I looked 36, or even 26 and 46.I guess I don’t mind looking older than him if I look younger than I am. I’d like to go back for clarification but if she thinks I look 80 I’d have to kill one of us.

The moral: Never marry a man with boyish good looks. Your ego can take the comparison at 25 but not at 62.

Growing Older

I was born in 1946 the first of the baby boomers. Now that powerful generation which demanded attention by the sheer force of its numbers has reached retirement age. I wonder whether we will continue to carry the weight to which we have become so accustomed.

I have always been able to say that each stage of my life was better than the preceding. Now I wonder. More than aches and pains and the physical degeneration of the body, I worry about the lack of respect that older women generally experience. Will I reach the place where no one listens to what I have to say? When repair men, and doctors, and adult children assume that my brain power declined with my physical power?

Mom in her later years would sometimes have Jim make calls for her—not because she was incapable but because she knew he would make more of an impact. She told me, “No one listens to what an old lady has to say.”

Maybe I should move to China where the elders are revered for their wisdom.

Back in the saddle again

Back in the caregiving mode again. Since my post last year around this time, Jim has had another metastasis—this time to the bone. The whole process of waiting, planning, deciding on treatment, and dealing with side-effects has begun again arousing many of the same emotions I experienced the first time around. Although the diagnosis shock has been replaced with something more like resignation, I still find myself trying to control every aspect of the process. In some ways knowing what lies ahead makes it easier. In other ways it seems more difficult. For anyone who doesn’t know, chemotherapy is grueling!

Jim’s attitude is good, as always. He had a few bad days adjusting to the news that bone met will require systemic treatment rather than radiotherapy. I, on the other hand, am somewhat depressed. A second metastasis pretty much eliminates the possibility of a complete cure—if that was ever a possibility. I know there is much to be grateful for but after five years with no recurrence I had really begun to hope the cancer was forever gone.

Back to the drawing board for me. I need a change in attitude.