Friday, August 31, 2012

Chemo Survival Guide

After six rounds of chemo, we’ve learned a few things that might be useful to others so I decided to compile a list of tips. Some of them are things we figured out along the way, others are things that people told us or I found via Google consultation.

First, I think it’s important to clarify that Dave had chemo (R-CHOP) treatments once every three weeks for a total of six treatments. That allowed his body a decent amount of recovery time in between treatments. He did not have radiation. I know that the side effects are often greater with more frequent treatments, and different with radiation. We think he had a pretty smooth chemo experience with fatigue and a general feeling of bloated misery being his biggest complaints in the 10 days after each treatment.

Now, on to the list.

1. Drink a lot of water. Or Gatorade. It flushes the toxins and helps you feel better. He found it hard to drink plain water during and for a day or two after treatment, so we kept Gatorade for those days. He normally drinks gallons of water per day, but he really had to make an effort to get enough fluid in those few days of each cycle.

2. Take the drugs they give you for nausea. If they don’t give them to you automatically, ask for them. It makes living life again after treatment a little easier.

3. Eat small meals frequently. He’s never been pregnant and I’ve never been through chemo, so we can’t say for sure, but it seems like the nausea is a bit like morning sickness in that snacking regularly keeps it under control. So eat, even when you don’t feel like you can. Also, he loved carbs for a couple of days after chemo, but protein is very important for rebuilding the body so try to work that in.

4. Sleep during and as much as you can right after treatment. The cycles when he had plenty of rest right before and plenty of rest right after chemo seemed to be the easiest on him.

5. Once you’ve rested and are able, get up and do something. He liked golf for the sunshine and the sweat, but I think any low key activity would be good for body and soul. This is also a good way to combat fatigue.

6. Put towels over the sheets and pillows the day of and the day after chemo. The drugs made him sweat a lot – and by a lot, I mean a puddle that requires changing the sheets. We started putting a towel down on the days when it was the worst so he could just get a clean towel if he needed it instead of having to get out of bed and wait for me to change the sheets.

7. Eat well. We didn’t cut out sugar entirely or switch completely to organic like some of the people who guided me through this, but we did boost his nutrition with vitamins and fruits and vegetables. He took a multi-vitamin, B complex, and acidophilus every day. All of those help boost blood counts, B complex also helps with hair and nail growth, and acidophilus helps with mouth sores and upset stomach. In addition to that, we kept V8 in the house and added spinach, tomatoes, carrots and other vegetables to our diet as often as possible (some weeks it wasn’t very possible because this has been the busiest summer in the history of ever). He sometimes had a hard time swallowing all the pills, so I bought him gummy vitamins and broke the rest of his medicine and vitamins in half to make them easier to swallow. (Obviously, you don’t want to break anything that is time released, so be aware of that.)

8. Gargle with a baking soda/warm water rinse to help the mouth sores. Dave didn’t actually have sores, but he did have soreness and that helped. Avoid spicy food and mouthwash that has alcohol in it. Even without sores, his mouth was, and still is, very sensitive to spicy things - even salt is too much sometimes. He never needed more than the baking soda rinse, but the doctor offered a prescription mouthwash.

9. Keep some acid reducer on hand. Dave had pretty bad acid reflux on the day after chemo, and he usually only needed a dose or two of Prevacid to relieve it.

That’s it. I feel like I should add a tenth one to even out the list, and maybe I will if I think of something else. Do you have any tips to add? If so, leave them in the comments.

Thursday, August 30, 2012

Dave's Chemo Journal: July 23, 2012

As it turns out, chemo isn't the hardest thing we had to do this year.

July 23, 2012

Chemo number six today. The last one. Hooray. It is a day of great celebration, but I know that I still have to watch the stuff drip into my body one more time as I feel my body slowly decline from a state of wellness to sick, tired and nauseated. Chemo day is not easy. The couple of days after aren’t either. I have associational nausea now. Strange things make me sick. Last week it was the smell of my leather computer case which I bring to the hospital with me on treatment day. The smell of the bathroom soap here at the hospital turns my stomach. The sight of the cup which I have been drinking out of during each chemo session makes me need to vomit. In fact, I just told Amanda to throw it away.

As bad as chemo is, I can now say it is not the worst thing that happened this year. Two weeks ago today, on July 9th, Nana had a heart attack and was rushed to the hospital for surgery. She had a stint put in that night and we talked to her and the doctor afterward. The doctor said everything went fine and Nana was a bit out of it, but that is to be expected coming out of surgery. She stayed in ICU Monday night, Tuesday and Tuesday night. We visited at 1:00 on Wednesday afternoon and everything seemed to be fine. We talked with Nana a bit and she seemed tired, but still “with it”. I went to play golf. The skies were dark and rain was on the way. I was the only one on the course, but I forged through, trying to finish before the bottom fell out. On the tenth hole, my sister in law called to check on Nana and I was telling her how Nana seemed tired, but appeared to be recovering well. I relayed how I thought she would stay another 24 or 48 hours in ICU and then be transferred to a regular room.

While talking to her, I noticed a missed call from my brother and Amanda sent me a text telling me to call her immediately. I didn’t have to. Apparently, the doctor had been looking for us at the hospital to talk to us about Nana. He called my brother just after we left and told him that her heart had suffered too much damage from the attack and probably could not function without the IV medicine which increased her blood pressure.

I left the golf course, raced home for a shower and headed back up the interstate toward the hospital. We visited at 5:00 and then began calling the family in to say goodbye. At the 8:00 p.m. visit, all of the grandkids, most of the great grandkids and some of the great, great grandkids visited Nana in her ICU bed and one by one, said goodbye. My brothers stayed the night in the hospital in the ICU waiting room and at around 1:00 in the morning, there was a code blue. It was Nana, but since she did not have a living will on file, the doctors and nurses resuscitated her.

I got word of the code blue at 6:00 the next morning and went to the hospital at 9:00, knowing this would absolutely be the last time I saw her on earth. My brother had talked to the surgeon and Nana’s primary care doctor, both of whom recommended we stop the IV medicine and let nature take its course. We visited Nana at 9:00 and she was in and out of lucidity. She knew who we were, but about half of what she said was just crazy. She did tell us about reading the Bible and about how there were many good verses. She could not pick a favorite. I asked her to tell me the story about her throwing popcorn at Granddaddy at the medicine show before they started courting sometime in 1938. She said, “OH! What you know about the medicine show?”

“Just tell me the story Nana.” And she did. All about how they used to come around to the country and set up a tent and do acts and tricks to try to sell medicine. She and her friend or cousin were sitting behind Granddaddy and Nana threw popcorn at him to get his attention. I think she had met him before, but this event was kind of the beginning of their relationship.

She told me about walking around the house with Granddaddy before they got married too. During their courtship, Nana and Granddaddy used to go to parties, presumably with other young couples, and they would play games. One of the games involved a boy and girl walking around the house together. I never have known what else was involved, but Nana told me that story about her and Granddaddy walking around the house one more time there on that ICU bed at Princeton Hospital on the west side of Birmingham, Alabama.

Those stories are essentially the beginning of my family history and I needed to hear them one more time from the person who lived them so I could say goodbye and consent to closure of the earthly struggle of this 90 year old child of the depression who has been the one constant during my constantly changing 33 years.

I kissed her on the cheek, brushed her hair back behind her ear, told her I loved hear and said goodbye. My brother and I told the nurse that we wanted to stop the medicines that raised her blood pressure to functional level and I left the hospital at about 9:30.

I got a message to call Amanda just after 11:30, but I didn’t have to. She was gone from us. Gone to Heaven to be with her Lord and Savior, her beloved husband and only child. How sweet it must have been for her. I know that she had been accepting, if not looking forward to death for many years. But it was still hard on those of us left behind. Much harder than chemo. Bring it on today, doctors and nurses. No matter what happens today, it will, at worst, be the second hardest thing I have done this year.

Wednesday, August 29, 2012

Dave's Chemo Journal: July 2, 2012

Here he introduces the concept of anticipatory nausea - something that is very common but that I read nothing about when researching chemo treatment. Also, some of the changes that cancer brought to his life.

July 2, 2012

Here we are for session five. It has been three months since I started taking chemotherapy, so today is kind of like an anniversary. I have had a great four weeks since my last treatment. We had father’s day, Ella’s birthday, a couple of other kid birthday parties and an early 4th of July batch of ribs on Saturday. I know I will probably be down on the 4th so I cooked early to make sure I got to enjoy some bar-b-que before treatment. There has been lots of golf since the last treatment. In fact, I played the day after I was last here. It was pretty rough, but I enjoyed it and it fit in with my philosophy that I will do whatever I am able during the process.

I did not come to the hospital with the dread that accompanied me on treatment 4, but I do have some “anticipatory nausea”. That is the term used by the nurses for the sickness in my stomach. It started last night and has continued on to today. I had a big breakfast of biscuits and gravy along with three bottles of water in hopes that my stomach will be sufficiently coated before they drip the poison in me and that I will have a head start on peeing the stuff out.

The doctor just came by for my consult. He tells me that my blood cell counts look good and we are ready to begin the treatment. I asked about the process after 6 chemo treatments and he said after I finish I will have a scan in several weeks. The expectation is that this scan will be normal. Then I will be scanned every six months or so for a period of 2 years. Again, the expectation is that all of these scans will be normal.

The doctor told me that he could probably scan me now and everything in my body would be normal, but indicated that 4 rounds of chemo is not known to be curative. Six rounds is apparently the magic number. I asked him if there was any possibility that I would have to go more than six rounds and he told me, “No, we don’t fudge on that number.” That means that by the end of the month I will done with chemo. Praise God.

The hair on my head and face already seems to be growing more quickly. I am shaving my head at least twice a week now and my facial hair is prickly even though I shaved just yesterday morning for church. The hair growth has surprised me enough to make me wonder if the last treatment was a bit watered down and not as potent as the first three. I am sure that is not the case, but I can definitely see the light at the end of the tunnel and I am excited to move on to the next phase of life. With the exception of the few days after chemo, I feel much better now than I have in several years. My stomach doesn’t feel full and bloated, I have more energy and can stay awake later. I spend more time with Amanda and the children and the relationships I have with them are richer and more satisfying than before. I don’t spend so much time at work, but the time I do work is more focused and productive. I no longer sit around for extended periods thinking about work being slow or business being down. I perform the work I have to do and leave. I am learning how to work to live rather than work to try to become rich. I have learned that there is much richness to be enjoyed that costs little or no money.

Like golf. At Montevallo. What started last Memorial Day weekend as something to alleviate my boredom while Amanda and the children slept has turned into a full-fledged passion. I played golf five days during the past calendar week. I am not good but I have improved. I have been trying to break a score of 100 for the past year, to no avail. When I started playing I didn’t keep a stroke score, but rather counted the number of balls I lost during a round – and it was consistently a double digit number. Yesterday I used the same ball from the 8th to the 18th hole before knocking it into the woods. [He has since broken 100 and played an entire 18 holes with a single ball. He brought it home and told me to keep it. It's sitting on my desk as I type. He was very proud.] Golf has truly become a passion. And while I could aspire to play golf at some of the bigger and nicer courses and country clubs, I am completely satisfied at Montevallo.
There is an old couple who drives around the golf course on their cart every day. Sometimes they have the dogs with them. Sometimes the lady gets out and walks while the man drives around. They drive around the course, staying out of the way of the “regular patrons” and play the open holes. I have seen them all times of day from early in the morning to just before dusk. They sure seem to be happy. And while I do not wish that I was retirement age, I certainly believe I could be content and happy driving around the Montevallo 18 after I retire instead of playing at some high class country club.

So much for that. They have started the meds and I am ready for the ride. Good riddance cancer. [Amen.]

Tuesday, August 28, 2012

Dave's Chemo Journal: June 5, 2012

From round four. 

June 5, 2012 – 1:40 p.m. Number four. Hopefully I am past the halfway point of this process and headed for the home stretch. I only have two more scheduled treatments after today. Then scans from time to time for the next couple of years to make sure there is no cancer in my body.

The last treatment was horrible. I did not realize quite how horrible until I was leaving the hospital on May 15, but I knew then that mistakes were made during the treatment. First, my white blood cell count was probably too low for me to have undergone treatment. It was 2500 on May 15 and that is the cutoff for the doctor to administer treatment. Today the white count was at 3300 and I feel much better. It is amazing the difference 800 blood cells can make.

Secondly, I did not eat during the May 15 treatment, so I was nauseated not only from the medicine but also from the lack of food. I choked something down on the way home, but it was too late. That combined with the low white cell count made for a miserable experience. I went to bed as soon as I got home from the hospital at 4:00 and pretty much slept all night, then kept the same bedtime on the next day. But after two days of primarily sleeping, I was fine.

Today, I feel better than last time. I still have nausea, but it is not out of control. I am tired, but functional. I really dreaded coming for the treatment today because of the experience from last time, but I am doing okay and feeling a little inspired. Maybe the dread will not be so bad for treatments five and six.

Monday, August 27, 2012

Dave's Chemo Journal: May 15, 2012

Dave's round three entry. It's a short one!

May 15, 2012 – 10:45 a.m. – Here I am back at the hospital for the third treatment. I have been here since 8 and they still haven’t started Rituxan. It will take at least two hours once it is started. I have gained weight since last time – too much weight. I am up to 247. I feel much better at 235. I know I need to make some serious diet changes. [Note: He had lost 20 - 25 lbs in the 10 days he was in the hospital, so his weight has gone up and down drastically in the last 6 months.]

I am not that upset about the treatments. I sincerely believe I am healed and this cancer will not come back. I have a peace about it. I don’t know when the next scan will be, but I know I will be devastated if cancer shows up.

I haven’t written in this journal since my last treatment. That is definitely a sign that I am better psychologically and emotionally. The hardest part is coming to the treatment. I felt so good this morning and for much of the past week and a half, but I have to come back in here today for more medicine. That is quite a mental challenge.

Friday, August 24, 2012

Dave's Chemo Journal: April 23, 2012

This is Dave's journal from round two.

April 23, 2012

Chemo number two is today. I am here in my recliner and absolutely dreading the moment when they come out and attach my port line to the bag of medicine. I just heard a nurse come up and say, “He’s vomiting.” I don’t know who or where he is, but I sure hope that isn’t me in a bit.

I have been feeling so good the last few days it is hard to actually believe I am sick. When I came for the first treatment, I was still recovering from two surgeries and had frequent pain and discomfort. Three weeks have healed my body to the point I feel really good and can function at an almost normal level. I really don’t want to take medicine that will make me feel worse than I do right now. The dread has been with me for the past couple of days and has even manifested itself in my sleep.

I dreamed last night that the doctor called Amanda and told her that I had responded so well to the first treatment that I did not have to take any more chemo. What a nightmare. I almost cried when I woke up and realized that no such call had been made.

I can hear the guy down the aisle from me here heaving his guts up now. They still haven’t attached me to the medicine. I think they are debating which chemo to give me first – the R or the CHOP. One nurse said I was getting CHOP first and she would wait to give me Tylenol and Benadryl until closer to time for the R. Then another nurse came and gave me the Tylenol and Benadryl and said, “Down the hatch.” So I took it and now they have been discussing what I am going to get first. I just heard the nurse who gave me the medicine say, “We may have to do the Rituxan first.” Surely they haven’t screwed me up already.

2:11 p.m. – Just about done with the second treatment. Not nearly as bad as the first. If I could not see the line connecting the medicine to me, I would not know it was going in. They gave the Rituxan first and it took a long time. I watched a movie all morning and have been looking around on the internet this afternoon. I was a little tired and sleepy, but I think the Benadryl has worn off so I am pretty much awake. Just sitting in a chair for this long is draining and I think that has made me as tired as anything else.

Thursday, August 23, 2012

Dave's Chemo Journal: April 19, 2012

In this entry, Dave recounts 12 days worth of activity between rounds 1 and 2 of chemo.

April 19, 2012

I am excited to see that I have not written anything here in 12 days. Writing is typically something I do when I am sad, depressed or devastatingly bored. There has been some of that since the last journal entry, but none in the past several days. Let’s see what I have done . . . .

On April 8 (Easter), I had a pretty good day. Church, hiding eggs with the kids, etc. We went to a dinner get together at 6 and I had to come home early. My stomach was sketchy and I was very tired. In bed by 7:30.

On April 9 I went to the doctor for blood work and my white cell count was 700 (versus 3800 at my initial appointment). The doctor told me I could become infected easily and I should be careful not to be around any germs if possible. I went to the office for a while, but could not stand to just sit there and not go to the courthouse. Knowing that I did not need to go to the courthouse and desperately wanting to go find some new work tore me apart until I left around noon and went to the golf course. That might have been too much for me as I was in bed right after dinner. My temperature spiked and we called the doctor’s office. He called us back from his home phone, but my temperature had returned to normal and he told us just to keep watching it.

On Tuesday, I had hearings in the morning and an appointment in the late afternoon. I worked a full day and felt pretty good all day. Amanda’s mom offered to keep the kids for the night so we had dinner and watched a much needed funny movie.

On Wednesday, April 11, I did go to the courthouse in the morning and then spent the afternoon visiting children who I represent in court at their homes. It was very fulfilling and I thoroughly enjoyed it.

On Thursday I went to the office and then made a trip to see another client in an institution in north Alabama. The 280 mile round trip was good for my spirits and I got home by 2:30, just in time to make it to the golf course.

I followed up with my primary care doctor in the morning on Friday the 13th and went to the golf course with my brother-in-law at 10.

I felt good and pretty normal from Tuesday through Friday and my health and treatment side effects did not keep me from doing anything that I wanted to do.

On Saturday, we all got up early and went to a local state park to participate in a run/walk for the Leukemia and Lymphoma Society. My sister-in-law organized a team for us and we all wore t-shirts bearing the slogan “Lymphoma Sucks” in lime green. The back of the shirts said, “I wear lime green for Dave Roper, a Certified Lymphoma Butt Kicker.” My kids had shirts that said “I wear lime green for my Daddy.” Those have made me cry more than once since the kids got them.

We participated in the race and walked with my brother and his wife. We took turns pushing the kids in the stroller and finished the 5k in 51 minutes. Certainly not as fast a time as I would have wanted to clock if I were running the race at full strength, but not bad considering the circumstances. After the run, our team had breakfast at the park. Over 20 people wearing their shirts in my honor. It was pretty awesome.

We went to the store on the way home and played outside in the pool in the afternoon before cooking dinner on the grill. It felt like a pretty normal spring Saturday.

Sunday was normal too – with church, lunch after church, a nap after lunch and a visit with Amanda’s uncle and cousins in the late afternoon. Great days all around.

On Monday it started happening slowly. I had not really believed that it would happen, even though the doctors told me that it would. I was at work when I first noticed it just a little and by the time I got home, it became apparent that this would be a reality during the next few months.

On Tuesday my son had surgery to get tubes put in his ears and it became such an issue while we were at Children’s Hospital that I decided to buy the necessary equipment and handle the problem. It looked like someone had been grooming a dog in his hospital room for goodness sakes. So on the way home, we bought clippers and new razor blades and I became a bald man that afternoon.

Wednesday I worked half a day and played golf in the afternoon – still feeling fine and perhaps using my “sickness” as an excuse to blow off work in the middle of the week. And today I am here, back at work with a full day planned out, feeling fine. I wouldn’t know I have anything wrong if the medical professionals didn’t keep telling me that I do. Of course, that makes me entertain the possibility of terminating my chemotherapy, but I know that would piss off the wife. So I guess I better keep going with it. Next one is Monday. I will probably be writing more then.

Wednesday, August 22, 2012

Dave's Chemo Journal: April 6 and 7, 2012

I've combined the next two short entries in this post.

April 6, 2012 (3:30 a.m.)

Depression, insomnia, reading lymphoma blogs, wondering will my hair fall out, wishing my stomach would feel normal, thinking I need to work tomorrow, hoping I have the energy to play golf and wishing right now I could clear my mind enough to pray . . . that is pretty much the order of the last hour and a half. I slept from about 9 p.m. until 2 a.m. and have been awake since. I tried to go to bed but gave up at 2:30. I have been reading a few blogs about other people’s cancer stories for the past few minutes, something that gives me mixed emotions. On one hand I am curious about what experiences I have facing me, but on the other, I do not want to know the horrors that could lie around the corner. Generally, I prefer walking blind into a situation I know will be difficult to researching and exploring the situation and dreading and worrying about the possible effects. Still, it is a bit comforting to know that there are other people out there my age and younger who have or have had the same disease I do that are well now. So, to the blogs I go. Maybe sleep will come soon.

April 7, 2012

So, yesterday I was on a high all day long. Woke up at 2 a.m. and stayed awake all day long. Went to the golf course at 7:30 and played a full 18. Had lunch at home about 1:00 and then worked in the yard until 3:30. Dyed Easter eggs with the kids and hung out with the in-laws until about 8:00. I crashed before 9 and slept hard most of the night.

Today we had soccer at 9:15 and then went to my grandmother’s house for lunch. I got tired mid afternoon and my throat has started hurting a little bit. I am still going pretty strong at 6:15 tonight and think I will be able to stay awake another couple of hours. I haven’t really felt like I have cancer the last two days. I have some aches and pains from chasing and picking up the little ones. My innards burn a little bit from time to time and I am trying to drink a lot of water to make sure all the chemicals get as flushed out as possible. Nausea and fatigue have not been part of the operation the last two days. I am cautiously optimistic. Everything I read and hear says that you will feel good a couple of days and then bottom out after that. I hope I don’t have a bottom out coming at the start of next week. I am just going to keep on doing whatever I can for as long as I can. That includes teaching the youth Sunday School in the morning. He is risen!

Tuesday, August 21, 2012

Dave's Chemo Journal: April 4, 2012

Here's the next entry in Dave's journal.

April 4, 2012

So I finished up with the first chemo treatment Monday at 5:30 pm. I was at the doctor’s office for a full nine hours. I left feeling a bit tired and nauseated. The doctor prescribed nausea medicine which we filled before going home. I took one as soon as we hit the door. I was in bed by 7:30.

The next morning I woke up around 6:00 and thought I might be able to go to the golf course for a morning round before going back to the doctor at 1:45 to get my shot. I went to the bathroom and took a shower, then immediately went to my recliner and stayed there for the next two hours looking at the television and internet, completely exhausted from my morning activity. I watched a movie and had lunch at around 12:00, followed by another nausea pill and some pain reliever. [Amanda's note: Remember that he was still recovering from two surgeries. He never needed pain reliever for chemo side effects.]

When we got to the doctor, the nurse called me back to the room promptly and proceeded with my shot. My experience the day before taught me to ask questions about any item being shot into my body. I asked the nurse what this shot would do and she responded that it would cause my bone marrow to create more white blood cells. “And what will it do to me?” “Well, since the medicine affects your bones, you will probably have some bone pain and flu like symptoms.” Great. That will go nicely with my nausea and fatigue. Bone pain. How lovely.

After the shot we visited a friend in the hospital who had given birth the day before. Then we went to my office for about an hour before heading to my daughter’s soccer practice at 5:30. I faded fast at soccer and spent a good bit of the practice sitting in the car. We made it home at about 7:00 and had dinner – leftovers from lunch that Amanda had already pre-plated for all of us. I was in bed again by 7:30 and pretty much oblivious to anything going on around me.

Today I woke up at about 5:30 and was again full of energy. Today was circled on my calendar as a day that I must get to work. I had something very important that required my attendance and at least part of my attention. I took a shower, brushed my teeth and shaved and by 6:15, I was ready to go back to bed. But I pushed through and left for work with the wife in tow at 7:00.

I made it through my schedule of items at 9:00 and 10:00 this morning, but started feeling a bit dizzy and lightheaded at around 10:45. I went back to the office and stripped off my coat and tie and shuffled papers for about an hour until lunch.

My “must be here for this today” assignment was scheduled at 2:00 and I made it through, finished at 2:45. As soon as that was over, I headed back to the office and was on the road for home by 3:00. Seven hours of work on the second day after a nine hour chemo session – not too bad. We will see what tomorrow brings. It is not quite 5:00 yet and I could probably sleep until the morning.

The hardest part of this is not being able to seize the day. I am looking out the front window of my house into bright sunshine with a gentle breeze. The temperature is around 80 and the skies are bright blue with big white clouds. A picture of perfection that would support all manner of projects and activities, and my body is too weak to do anything but go outside and sit. Something that will only make me more frustrated by my inability to truly enjoy the weather.

Monday, August 20, 2012

Dave's Chemo Journal: The End and the Beginning

Dave sent me the journal he kept throughout the chemo process and told me to post as I see fit. I read the whole thing and there is good information in there for others who are just starting the process. There will be several posts, but I've decided to start with the last entry and then back up to the beginning.

August 14, 2012

I guess, just to put a bow on things, I will write in this journal today. Yesterday would have been the day I would normally expect to go for chemo at the doctor’s office, but we just had an appointment and my PET scan showed all clear for now.

I read the first couple of pages of this journal before coming here to type the final entry and, amazing as it is, even reading the words I typed while receiving the chemo treatment brings a twinge of nausea to my stomach. So to heck with me reading this. Hope you, whomever you may be, enjoy.

Now that we have his blessing and get a general feel for how over the whole situation he is, here is the first entry. It's a long one.

April 2, 2012

So, here I am at the first day of chemotherapy. I am sitting in a beige colored reclining chair with my feet up and a paper pillow behind my head. My neck hurts because I cannot find the proper fold to make the pillow comfortable but other than that I feel pretty good. In fact, the pain and fatigue in my neck is my primary source of discomfort, much more intolerable than the healing incisions from my recent two surgeries.

There are two bags of fluids hanging beside my chair and fluid is dripping into my IV and into the port in my chest. The nurse said these initial fluids are the pre-treatment medications given in attempt to prevent any sickness from the actual medications. I have not actually taken any medicine yet, but I will by the end of the day. They say I will be here between five and six hours today receiving this treatment. I am fully equipped with my laptop, iPod, book, sunflower seeds, mints and phone to attempt to combat the looming which I know awaits. It is 11:20 and I have been connected for less than an hour though I have been at the clinic since 8:30. It appears I will spend the entire work day with the nurses and staff here at the center.

I met with the doctor this morning and he was very comforting and reassuring. This was my first contact with him since my initial appointment and my first opportunity to discuss the results of my PET scan with him. The nurse called ten days ago and told me that I have a minimal amount of cancer remaining in my body, but she could not answer any specific questions about the meaning of “minimal amount”. I was excited to come to the doctor today to obtain a more precise definition of this term even though I was nervous about taking the chemotherapy.

We waited in the room for the doctor for about half an hour and I was opening the door to go to the bathroom just as he was coming in. He left my chart on the table and went to see another patient, giving me the opportunity to review my records while waiting on him to come back. When I started looking at my chart, Amanda jumped to her feet, excited to take a peek. We could overhear all of the activity in the hallway and Amanda quickly sat back down several times when she heard footsteps approaching our room, leaving me standing alone with my open medical chart.

When the doctor finally came back in, I went through my list of questions:

“What do I expect from chemotherapy?”
“What physical restrictions will I have after treatment?”
“What does a minimal amount of cancer mean?”

The doctor went through the anticipated side effects of chemo with me and then went over all of the precautionary medications they administer in attempt to prevent those side effects. He also indicated that I have “garden variety” (a term actually listed in my medical chart) diffuse large B cell cancer and that my treatment regimen will consist of six sessions of R-CHOP chemotherapy.

Regarding physical activity, he indicated that I could work and participate in light exercise. He recommended that I not work out but told me that I could play golf. He went on to recommend I read a particular book to improve my golf swing and gave me three research based tips about golf he had recently read in the Wall Street Journal. After five minutes or so discussing golf, he returned to the business of discussing cancer and told me (after reviewing the reading of the PET scan that I had already thoroughly reviewed without understanding a bit of it) that I have no significant traceable cancer in my body. I asked the doc what stage of cancer I have and he kind of beat around the bush a little but told me that I am probably a 1E or maybe a 2. He then reported that with my particular brand of “garden variety” cancer, treatment of Stages 1, 2 and 3 is virtually the same and Stage 4 is really what you want to avoid. Perhaps that is the perspective from the medical professional, but I was elated and relieved to hear the magic words “Stage 1” come from the doc’s mouth.

After we met with the doctor, I went to the “party room”, a room with nurses, supplies and a few chairs to wait on my recliner. There are at least twenty recliners in this place and they were all full. I had no idea there were so many people receiving cancer treatment. A nurse came into the party room in a few minutes and did my “teaching”, going over what side effects to expect from the medications, the remedy for each effect and the situations necessitating a call to the office.

In a few minutes, a recliner opened up and I was escorted to it and my port was hooked into the IV bags. After about an hour, a nurse came over to my chair with a large syringe filled with red colored liquid. She was wearing latex gloves and had a gown covering her clothes, so I knew that the real chemo was about to begin. All of the prior three hours had just been prep work for this moment.

The name of the red medicine is Adriamycin and the nurse said she wore the gloves and gown because it would cause a chemical burn if it leaked onto her skin. “And you’re putting this inside of me?” I asked. “Yep. It burns up the cancer.” How comforting a thought that something which burns the skin is being shot inside of me though the IV line connected to the plastic port implanted in the right side of my chest. But the red stuff didn’t really bother me. It went in easy and I didn’t feel a thing.

Next was a much smaller syringe containing a clear liquid called Vincristine, then a new bag of clear liquid to drip Cytoxan into my line for 45 minutes. After the Cytoxan was connected, the nurse brought Benadryl and Tylenol to take by mouth and get ready for the next stage. The nurse told me the Cytoxan might make my nose burn and it did just a little, a feeling like when you have been cleaning the bathroom with the door closed and inhale too much Tilex or Clorox. Nothing unbearable.

At 12:30, the Cytoxan was finished and the nurse connected me to a large bag of clear fluid called Rituxan. This medicine is the “R” of R-CHOP and the initial treatment takes four hours. I think the Benadryl and Tylenol was to prepare me for the Rituxan. The nurses have told me that this medicine may make me have chills and that if I do have chills, they will likely occur at about the one hour mark. I am only fifteen minutes in, but so far, I don’t have anything extremely unusual going on. My legs seem a little cold, but I think I may be feeling that just because I am expecting a chill. We shall see.

It is now 1:40 and I have finished lunch and have had time to get acclimated to the Rituxan. My hands and feet feel cold. I touched my hands to my face and my face felt ten degrees warmer. The nurse said my hands felt fine, not cold. Another nurse just came by and I was about to drift to sleep mid-sentence. She said she was going to bump my dosage up a little and asked how I felt. I told her that my hands are cold and I just got dizzy. She stopped the machine. Looks like I might be here until after 5.

I went to the bathroom a little while ago and had the harrowing yet somewhat predictable experience of producing urine with the color of orange Gatorade. This was not at all surprising considering the chemical red drug the nurse put in me this morning. The nurse told me this is normal during chemotherapy.

Now it is 3:30 and lots of folks have already left the hospital after receiving their treatments. I am stuck here getting this Rituxan and the bag looks to still be about half full. I never dreamed that my 8:30 appointment would last the entire day. Hopefully, the future treatments will not require me to spend the whole day at the doctor’s office.

R - Rituxan - 4 hour, clear drip
C – Cytoxan (Cyclophosphamide) – Clear drip
H – Doxorubicin Hydrochloride – (Adriamycin) - Red push
O – Oncovin (Vincristine) - Clear push
P – Prednisone – 4 tablets for four days following chemo administration

Saturday, August 18, 2012

Two Year Old Luke

Two-year-old Luke has learned how to use his great big, brown eyes for bending your will to his own. They are oh-so-sad and soulful when I tell him no and he really wants to hear yes. It’s terribly cute. It is not cute when he realizes it’s not working and opts for plan b – dropping all of the bones out of his body until he crumples in a puddle on the floor, screaming. Alas, he is two.

Today is his second birthday. He’s growing up so fast I find myself really needing to focus so that I don’t miss it.

His number one job is playing and he takes it very seriously. He plays alone, he plays with us, he inserts himself into Ella’s games. He imitates her and now he makes up his own world to play in. Lately he’s been playing Birthday Party, lining up all of his cars and trains and singing Happy Birthday, complete with a toy ‘upcake. When we play with him, he makes us take off our shoes and sit in the floor – unless we’re dancing. We do dance. I love to watch his little body dancing all around telling me to “Dance Mama!” I wish I had danced in my earlier life like I dance with my 2 year old.

He and his cousin Jake are fast friends, already teaming up for trouble and blaming each other for it. Well, Luke blames Jake, but I’m certain that Jake would blame him too if he had all the words.

He is becoming more independent every day. He packs his own toy bag to take to Grandmother’s, brushes his own teeth (I still insist on having a turn), puts his shoes on, finds his things and puts them away when asked, and picks his own cup. Have mercy, cup-picking is a tantrum trigger for him, just like it was for Ella.

At meal times, he says the blessing with us, and knows most of the words to all of them. He sings so much that I’m convinced that he has music in his head. His life soundtrack consists mostly of “Skinny Marinky Dinky Dink” and “Down by the Station” right now. He also gets very excited when we break out the Southern Gospel and sing “Glory Land” at the top of our lungs.

He started taking gymnastics this summer and he seems to love it, judging by the amount of tumbling he does at home. While his balance is amazing, watching him practice his beam skills at home is occasionally heart-stopping. This fall he will go to preschool 4 days a week, and I’m certain he is ready. I know he will be excited that he gets to go every day like Ella does.

Though he still looks like the same skinny bean he’s always been, I can tell he is heavier when I wear him now. He is certainly longer. He alternates between eating like a 14 year old boy and picking at his food – depending on what fun he had to leave to eat and if his teeth are hurting. He still has to grow five more teeth before that special trial of parenting is finished. I think everyone around him is ready for that to happen. He doesn’t cry about his teeth; he turns into his evil alter personality and lashes out at every person, place, and thing around him. We’ve learned that when Luke assumes the likeness of a cornered, feral cat, it’s time to give him some Motrin.

When he’s not teething or mad, he has a very sweet, easy-going personality. He loves his family and freely blows kisses and tells all of us, “‘ove you!” If you can catch him, he gives really good hugs.

His hair is getting too long but it’s wild and beautiful and one of his last vestiges of babyhood. Cutting it will signify the end of an age in our house. I’m already mourning those baby curls and they aren't even gone yet.

He still nurses briefly at bed time, but that is rapidly changing as he more and more often tells me, “Night, night,” and rolls over to fall asleep. He has slept through the night a handful of times recently, but he usually still wakes once or twice to cuddle and he almost always finishes the night in our bed. We aren’t in a hurry to change that.

He is a fun-loving, mischievous, affectionate kid and I count myself lucky to be his mother.

Monday, August 13, 2012

The Turning of a Season

It seems fitting that we found out that Dave's cancer is in remission when the first hint of fall is in the air. Just yesterday he called me outside before church so I could feel the fall before the sun burned it away. It's a welcome reprieve, the remission with the changing season.

While I am overwhelmingly happy, I'm also a bit shocked that it really is over - that we really did survive it. Despite constant reassurance and an otherworldy sense of peace, I've forced myself not to count the blessing before I heard the words from the doctor's mouth. Like a baseball player who refuses to change his socks for fear of ending a winning streak, I have refused to commit myself to the idea that everything would be fine for fear that I would jinx it.

As the doctor opened Dave's chart this morning to tell us the results of the PET scan, he said, "Let's see what kind of pet you are." I think we both sighed with relief. Whatever tiny bits of disease appeared on his first PET scan in March were gone this time. The surgery worked. The chemo worked. The prayers worked.

Thank you, God.

He got clearance from the doctor to have his port removed whenever he is ready. As he got dressed this morning he told me he was ready for it to be gone. He'll have another PET scan in three months. If that one is clear, he'll have scans every 6 months until he reaches the 2 year mark. There is a 70% chance that he is completely cured, but the greatest risk of relapse is in the first 2-3 years after treatment, so they'll keep close tabs on him for the next few years. After that, they'll do bloodwork and scans as needed until the 5 year mark. After five years of clean scans, we get to use the C word. For now, we'll just stick with a capital R, for fear of jinxing it, you know.

And, we will praise the Lord.
"Praise the Lord, my soul;
all my inmost being, praise his holy name.
 Praise the Lord, my soul,
and forget not all his benefits—
 who forgives all your sins
and heals all your diseases,
 who redeems your life from the pit
and crowns you with love and compassion,
 who satisfies your desires with good things
so that your youth is renewed like the eagle’s." - Psalm 103: 1-5
Again, thank you for lifting us up. We would have been lost without the prayers.

Monday, August 06, 2012

Miss Communication

Early Saturday morning (like roll-out-of-bed-and-into-the-car-early), Dave and I were driving up the interstate with both kids in tow. We ate breakfast in the car, so I was in the process of loading caffeine and still groggy.

Dave, as he usually is first thing in the morning, was all happy and singing with the music up loud enough to drown out Ella.

Ella, like Dave, was also all geared and chattering non-stop at the top of her lungs.

Luke, in an effort to compete with Ella, was alternately hollering, "Mama!" and "Hussshhhh" when I responded.

I've mentioned before that I don't like to be spoken to in the mornings, right?

Anyway, about halfway through our drive, after thirty-ish minutes of coping with the music, and the singing, and the chattering, and the Mama-hushing, all at top volume, Dave asked me, "Where is Greece?"


As my sluggish, over-stimulated brain processed that question, I wondered why he was asking me something so random. I looked at him weirdly and I replied, "On the Mediterranean."

He looked at me even weirder and said, "The CD."

Oh. Grease! The musical. For the loud singing. Right.