Today, a set back.

Today was to be treatment four, with blood work and a consultation from Dr. Kalter. I was expecting him to say we would need to continue on the same course of treatment for four more weeks.

Instead, he told us that he is not happy with mom's progress and wants to step-up to a more aggressive level. She is to stop taking the Leukaran, and no Rituxin today.

So, we return next week for three days of treatment:

Wednesday ~~ Rituxan ~~ the same treatment she's had the past three weeks

Thursday ~~ Mitozantrone aka the "blue kool-aid"

Friday ~~ Fludarabine

Then we visit Dr. Kalter on September 26 to determine if additional sessions are necessary. If yes, treatment will be for three days every three or four weeks and she may need up to four sets of sessions.

It sounds like there will be increased side effects, although he did say that she will not lose her hair. She's been complaining about indigestion/heart burn, so he offered her Nexium. She said she didn't think she'd need it, but he said she would next week.

Needless to say, she really freaked out. I think we could both see her shutting down, so Dr. K just started talking to me. He wrote the chemo names down and made sure I could read them (here's where that journalism training comes in handy). He has the perfect poker face (guess you need it in his field) and is very low-key in his approach.

She started to cry as soon as we got on the elevator. This is not good, she kept saying. This is not what I expected to hear. I told her that she needs to remember that she is not as sick as the others we see, that she needs to keep this all in perspective. She settled down pretty quickly and seemed o.k. the remainder of our afternoon, although she was ready to go home pretty early.

I know she is worried. I don't know if I am doing the right thing to immediately work to shut down her panic. I don't know if I should let her express it more. I'm afraid it will spiral out of control and make it worse than it needs to be.

I keep thinking, if only she started sooner. Hadn't waited so long to decide. Maybe it wouldn't be this way now. Guess it doesn't really help to speculate now.

I am disappointed. I thought we were almost done. That it really would be the "piece of cake" she called it after that first session. I am worried. Maybe this is more serious than I have been taking it.

Happy birthday to me!

I have been trying to get mom to agree to a vacation celebration once this is all over. I've offered up a few options. She kind-of ooh'd over California. Last Friday, during chemo, she showed me a travel package for Thanksgiving in New York City. This is what I really want to do, she said. So we are. I put the deposit down today.

I continue to be flabbergasted by how tired I am Friday evenings and through the weekend.

Let's face it. If you're going to get lymphoma, this is the best lymphoma to get. It's curable. The treatment has been without side effects or difficulties. This has been easy.

Then why am I so tired? Maybe I've got a little denial going on myself.

No blow-by-blow today. I had to leave for an appointment before they called her back.

Once I returned, Dr. Kalter came by and was really pleasant. He asked if she's experienced any toxicities (is that a real word?). She said she's been perspiring a lot (o.k., so dripping buckets of sweat was her version). He didn't seem too worried. He did show surprise that the growth is not less visible. I guess that means she really will get the full eight weeks of Rituxin (he said early on if things went well she might only need four).

Today was serious cancer day at CTRC. The two women and two men in today looked really, really ill. The two women have been in before -- breast cancer. They both wear wigs and are nearing the end of their treatment.

There was an older gentleman who seemed to be having difficulties walking and talking. There was the younger man (say, mid-40's) from last week. He looks like he is in constant pain. It's hard to look at him. The others smile and nod knowingly. He does not, seems like he cannot. He mostly sleeps.

When I asked what she wanted to do this afternoon she lamented that it would depend on how she felt. It startles me that she still expects something to go horribly wrong. I think I would be joyful if things were going as easily as they have been. I told her I expected she would feel the same as she has the other Fridays -- just fine. When I suggested a movie, she perked right up and was fine the rest of the day.

We had Schlotsky's for lunch and went to a matinee of Tortilla Soup. We both really enjoyed this Hispanic version of Eat Drink Man Woman. Word of caution . . . don't go hungry!

Do I feel guilty taking off work and ending up at a matinee? Actually, no. Mom told me today how much she appreciated me taking off work to be with her. I just know it's what I'm supposed to do.

P.S. My short visit to the doctor resulted in a tendinitis diagnosis. Three weeks of physical therapy, three times a week. At least it's not the dreaded carpal tunnel.

Wow. This is totally amazing to me. My blog was featured in the Guardian, a national newspaper in the UK. (Thanks to Jen for the link.) I am blown away.

My schedule has changed, so I will be able to go with mom to chemo tomorrow.

Oh, and just for the record ~~ I'm a girl.

Today I told mom that I have a conflict on Friday. I asked if she wanted to reschedule for earlier in the day so I can still go and make my appointment. She said no, that she would be fine on her own and if she started to feel funny, she'd just pull over and call me. I laughed. I said, "Mom, I'm not worried about that. You'll be fine. I'm just worried that you won't find the right elevator." She laughed back, sounded a little embarrased and told me which elevator she's supposed to take (she got it right).

So, no minute by minute diary of treatment three. I know you're disappointed.

Get yourself a beverage and a comfy chair. This may be a long one.

Week Two in "course of treatment world". Mom was much more relaxed as we went for her chemo this morning. Much more "la-di-dah!" about it. Although once we got there, I found her to be a little . . . lost, for lack of a better word. Not knowing where to go once we enter the building (the elevator is just inside the door, she zips past it). Acting confused when we get to the office. Like she can't see the sign-in desk just off the elevator. I have to point to it and remind her to sign in. It's like she's going somewhere for the first time and it's unfamiliar to her. Maybe she was less "zippity-do-dah" than I thought.

Today was harder for me. I guess because I knew what to expect. It's hard for me to watch them put the i.v. in her arm and know that they are essentially pumping poison into her body. I felt a heavy heart today as we got to the office. To see the couples and families and know that one of them has cancer. That someone sitting in this room with me may be dying. Soon.

As we waited to go back, I watched a father and son. The father was hairless and obviously distressed. He kept resting his head on his cane. Hiding his face. His son looked at me with great sadness. He seemed unable to console his father. The stories (real or imagined) are so compelling to me.

There were two couples, together. Long time friends, you could tell, who had come to help. They were all elderly. Mid to late 70's. One man pushed the other in a wheelchair. The women sat and talked. His nurse came out to talk. He'll have treatment at home over the weekend. They talked about his bone cancer and easing his pain.

They called us in after 10 minutes. LaDonna did mom's i.v. It was more painful this week than last. Scar tissue in the vein already. I can't imagine what it must feel like for those who come week after week.

9:45 a.m. -- i.v. of saline (sodium chloride)
9:51 a.m. -- .25 mg benedryl
9:55 a.m. -- pre-med
10:08 a.m. -- second saline bag; starts having strong reaction to benedryl -- drying head, drowsy look, dizziness
10:25 a.m. -- Rituxin, new larger saline bag
12:45 p.m. -- done

Today was men's day at CTRC. Other than one woman who left within an hour of our arrival, mom was the only woman in the room all three hours.

There was a 42-year-old man with Non-Hodgkin’s Lymphoma. They removed 22 lymph nodes. He had a distinctive scar on his neck. He had the "blue kool-aid" as they call it. He started with Rituxin and moved up to the blue medicine (I don't know what it is). He tells us that if you get the "red kool-aid" you're really sick.

The woman had the red kool-aid. An older man from last Friday came for his shot. Another man from last week was back for his final treatment. Colon cancer. 26 weeks of weekly treatment. He was really, really happy. He and his wife brought cake and wine for the nurses. He was so full of joy in talking to everyone. Another gentleman, I'd say in his 80's, also came in for the blue kool-aid. He was joking and talking and obviously a real "whipper-snapper." He talked about getting better and it being in God's hands.

Even though I came in with a heavy heart, sitting and listening to these . . . warriors . . . made it all easier. There really is a kinship in that room. Of people going to war and wanting to help each other. Working to raise spirits, even if in doing so they just want to cheer themselves up.

I continue to talk with mom about attitude. I just don't feel like she gets that part of it. I'd hoped those men and their positiveness might rub off on her. Later, she made reference to the gentleman talking about God by saying, "It's out of my hands." I told her, "Not totally. You can control whether or not you worry too much about getting sick." She just shrugged her shoulders.

I've told her that when all of this is over we will take a trip to celebrate. I've suggested California -- a drive along Hwy. 101. Or she can come with me to Chicago for a conference in October. Spend the days along the magnificent mile or similar. She is reluctant to agree. Reluctant to choose (now there's a surprise). Says she needs to wait until she "knows."

I don't want her to place her life on hold until she "knows." I want her to get excited about doing something in the future. I want her to be certain there is a future. This is curable. It will all be over soon.

I'm glad she talked to the guy with lymphoma. He told her that his course of treatment (that's the official phrase, can you tell?), is simply preventative. That they got all the cancer during surgery. But this is to make certain they kill any remaining cells. That he feels fine. All he's lost is a little weight and he's never been sick. When I told her again that I think this was the right choice, she told me that talking to him made her feel better.

She talked about not taking her Leukerin tonight. That it might be too much again. When I made a face, she agreed to take it and just have the benedryl handy. It's better to stay on course. She did well this afternoon. We made a brief jaunt to the mall (haircut for me, present for my friend Sandy's nine-year-old daughter -- can we be this old??). She walked well, but conceded she was tired when we left. As was I.

It's amazing how stressful the day can be (have I mentioned I've started taking stresstab vitamins?). I feel mentally and emotionally exhausted, without even really doing much of anything but sitting around. Amazing how the mind and body works.

Mom continues to do well. Each day I ask her how she feels and she says fine. Today she almost said it wistfully. Like she didn't want to fess up. I told her, "Maybe you'll be like Wynona. Maybe you'll forget you even have it."

Wynona has a brain tumor that she gets monthly shots for. She's reassuring to mom because they have the same doctor and Wynona readily admits that she forgets she is "sick."

We go back to CTRC on Friday. I am curious to see how much benedryl they pump her up with this week. Dr. Kalter said we should begin to see results after the second or third treatment. Amazing.

I've read that some think Sex in the City is written by gay men for gay men. I wonder, since it speaks to me, what does that say about me? ; )

So, Jeff points out that I am a "Blog of Note" on Blogger. I must say my first response was Holy Shit!

I had no idea that strangers would read this journaling process that I am using as a catharsis (Wendy, I'm stealing your word). To my even greater shock is that these strangers actually take the time to write me. Erin, James, Any, Logan, Yoshiaki and Wendy. They share stories with me. Words of encouragement. It gives me great hope to know how much we really are alike (no matter where we live or what language we speak) and that as a whole, we really do care about what happens to others.

Today has been a better day. Maybe yesterday was a crash day from her adrenaline high on Friday. She's no longer getting hives from the Leukeran, but it does make her dizzy and lightheaded. She's also very yawn-y. She said it took her a while to wake up this morning.

Her leg doesn't hurt again today. "Weird," says she. Silent is me. She's going to tell them in physical therapy tomorrow that she wants to take it easy and not overexert herself now that she has started this process. We talked again about thinking positive being an important part of this process.

I don't want what she thinks chemo should be to become the reality. I think a part of her wants this to be a bad process. So that she can excuse taking 53 days to decide what to do. The way I see it, if one of us is getting an "I told you so", it sure as hell better be me (not that I would ever be that way!). Sure it's easy to be judgemental from over here in cancer-free land, but I'd like to think that if lymphoma was my diagnosis, I'd be like "Hello, let's get this show on the road! Kill it already!"

Postscript: Debra ~ thanks for calling. Mom says hi back.

I would not characterize today a better day than yesterday. Today she was old again. Leg hurting. And a new one, jaw hurting while she ate. It's like she's turning into someone I don't know. When I attempted to joke that she was "just falling apart" she actually nodded her head yes instead of putting me in my place.

We went to a pharmacist to check the drug interactions with the Leukeran and the pain killer/anti-inflammatories for her hip/leg pains. Luckily it is o.k. to take them all, although the painkiller and benedryl will make for added drowsiness. Had lunch at Super Salads and ran a few other errands. Back at her place she kept nodding off. When I asked if she wanted to take a nap, she said no, but kept resting her eyes. I left so she could "not-nap." Went home and took one myself. I was tired.

Talked to her earlier this evening. She says she didn't nap. Oh, o.k. She'd talked to my Godmother, who is in early stages of dementia. She was having a so-so day. When did everyone in my life get so old?

I guess I can't expect every day of this process to be a good or easy one.

Mom took her first dose of Leukeran last night. She says 30 minutes later she broke out in hives and her lips started to swell. She took two benedryl. Today she sounds foggy and thick tongued.

Whew. I'm tired. Mentally. Emotionally. Physically. I feel like I could sleep for two days. My body feels beat up and my mind feels fried. And I'm not the one getting chemo-ized. (hey, that rhymes!)

Which makes me wonder, In a situation like this, who is it worse for? The person experiencing the cancer or the person watching? Was that just a Carrie Bradshaw ~ a la Sex in the City ~ "question of the episode" moment?

I keep saying we did this and we did that like I have cancer too. But I don't. But I do. It's been a long nearly three months in this journey since diagnosis. So much torment over this decision. I am so relieved to hear her tell someone "it was a piece of cake."

Again tonight she brings up her worries of a lowered immune system and getting sick. I tell her to think heathly. I hope that as she wakes up tomorrow and sees she is still healthy, that she is still herself ~~ that the negative worries will disappear.

She's been manifesting this worry to her hips and leg (a known trouble spot). Literally paralyzing herself with fear. Tonight at a church dinner (yes, she is feeling that good) she was running around like a mad woman. Hop up and run get mayo. Hop up and run get cookies. Hop up to say hi to someone across the room. A little later (after hopping off to do something), mom sat back down and commented how her leg wasn't hurting her at all. When I took her home I tried the "maybe it really was stress" tact again, but she's not going to take that on. Not just now anyway. She talked about how it hurt so bad at night (gee, not cause you're laying there thinking about anything, no unt-uh . . . ). I let it go and told her to call me if she feels funny in anyway at all. Then I told her I thought she made the right decision and that I loved her.

It's over! What a relief. I can't even being to tell you.

Our day:

8:55 a.m. -- stuck in traffic, mom very uptight
9:05 a.m. -- arrive at CTRC
9:25 a.m. -- get called back (all that traffic worry for nothing)
9:30 a.m. -- saline drip started
9:45 a.m. -- benedryl added
10 a.m. -- Rituxin added
10:25 a.m. -- more benedryl, Rituxin stopped
10:35 a.m. -- Rituxin started again
11:05 a.m. -- increase in Rituxin
12:35 p.m. -- increase in Rituxin
1:45 p.m. -- finished!

Yes, I am anal enough to write it down.

The benedryl is for any allergic reaction you might have to the rituxin. Mom's was limited to "tight" head, like her allergies were acting up. It started to really bother her, so they stopped the rituxin for a while and shot her up with more benedryl. Frankly I don't know how she is still standing. I'd be passed out. Adrenalin I guess. The benedryl helped, with only dizziness an issue.

Dr. Kalter came to keep on her about 10:45 a.m. Thanked her for coming back. Told us he'd be home all weekend and to call with any questions.

I stepped out for a while to get her Leukerin filled ($106 per month). The pharmacy didn't have enough to complete the prescription, so they gave us a five-day supply and the rest will be in Tuesday. I also stopped at Luby's and picked her up some vegetable soup, which she ate without hesitation, finished it all and had no nausea.

There were approximately 8 - 10 others getting treatment (various levels, various types of cancer) over the hours. Some had shunts; others had to get poked like mom. One man came in for a shot, another was in for his last treatment. All the others were women. All had breast cancer. Two had no hair. One wore a wig (she confessed, I'd have never guessed), another wore a bandana. Once, a young girl came from another room to use the bathroom. She looked gaunt and frail and, well, she looked like she was dying. It made me feel sick to my stomach. I called my friend Linda to give her a progress report and even though we were joyous about mom doing so well I told her, "Yes, but I look around the room and everyone there has cancer."

We stopped at Phyllis' and the grocery store on the way home. I came home to grab some benedryl (yes, I know they carry that at the store), and post a blog before heading back over. She left a message for my brother and told him "it was not what she thought it would be." Thank God for that.

Tomorrow is d-day. Or should that be c-day? Our first day of treatment. I feel a whole range of emotions. I can hardly wait for Saturday. Then tomorrow will be over.

I am taking the day off so I can just hang out with her. I don't know that they will let me. But I'd be worthless at work anyway. I hope I can help entertain her or, whatever. Just to help her get through what is supposed to be the worst of it. O.K., so I am terrified. I don't think I have ever seen my mom sick. I mean really sick. She's beeen healthy all my life. There's that part of me that never wants to see her vunerable, although I must see it all the time. Dang this parent hat.

She told my brother on Tuesday. I'm glad for that. He needs to know. For as much as I hate the parent hat, I'd rather be wearing it than be him anyday.

I know there are lots of people out there praying for my mom, thinking positive thoughts. I am so grateful for that. I am grateful for all the kind words and just plain gracious treatment I've received these last few months. I am so lucky to know so many good people. That's what they say in a crisis, right? You find out who your true friends are.

Thank you Jeff.

After several months, mom finally committed today to chemo for her cutaneous t-cell (mycosis fungoides) lymphoma on her nose. Hallelujah!

She starts treatment on Friday. Supposedly this first drip will be a "bear." I am curious to see what this really means. Like violently ill? Vomiting? Fever? Aches and pains? Is it an exaggeration? I'll let you know.

The course of treatment:

Immunological therapy - Rituxan
once-a-week for eight weeks
This is the drip therapy that starts out a bear and gets better. My notes from the first visit with the oncologist (6-14-01) say it will take 3-4 hours to work though (which I understand she will do in-office).

Chemo - Leukeran
This pill is taken twice daily for three to four months. Dr. Kalter promises no nausea or hair loss.

I am afraid. Afraid of my roll in the decision-making process. For as much as I professed I would wait for her to decide on her own, the waiting was killing me. I'd come home almost everynight and cry at some point in the evening. Worry is exhausting.

I finally had to put on my parent hat and for as much as I believe chemo is the right decision, she needs to believe it too. Sometimes our fear makes a situation worse than it would/should be. I hope her fear doesn't get the best of her. I hope this time next week her fear has turned to joy in realizing that she will survive this and kick it in the ass.

I don't really know what this is to be. I just know I am supposed to be doing this right now. I make no promises for what you may find here.