Views on Religion

September 7, 1987

Jihad and I were able to go on vacation and had a great but tiring time in Eureka Springs. We went to Granite, OK, to visit my sister, and my parents and other sister were there, too. I thought it might be awkward at first, talking about my cancer, but it wasn't because we didn't really talk about it. Lynda asked about getting her blood drawn to see if she matched me for a bone marrow transplant and when it could be done, and Janelle said she could do it later this month. Really, nothing else much was said about it.

I don't feel much different still, except that I'm feeling a little weaker than usual, I feel nauseated sometimes, and I don't have much of an appetite. I was fixing dinner tonight, and the smell really got to me

I'm really glad I got to get away this week. It's nice to be around people who don't know me and look at me as a regular person. I'm probably paranoid but it seems like my nephew Jonathan was more distant than usual, but his sister Martha seemed to be okay. Janelle's husband Arnold also was a little distant. Lynda is doing well, though. She has so many of her own problems.

September 8, 1987

Dr. Smith thinks I need to go to Houston to enroll in their study before chemo. He's going to get back to me about it tomorrow.

I'm trying right now to keep my faith strong. I've never really felt perfectly sound in my faith (I became Muslim almost 5 years ago) and that bothers me. I keep having little doubls that I need to put out of my mind because doubts are very unhealthy. I know that God is testing my faith to make it stronger, and I feel it definitely needs to be stronger. I just hope I can emerge victorious and not fall. I must believe that Allah would not test me beyond what I can endure, because I can't believe that God would want me to fail and "backslide". Personally, I think I'll do okay and come out more convinced (which is what I need).

I know my faith is not as strong as it could be, but it must be fairly strong to warrant such a hard test. I think having cancer is an extremely hard thing to deal with (almost as bad as losing a spouse) and so my faith must not be too weak. I just wish I could feel completely convinced. It's like I'm standing on the edge, looking in, rather than completely inside. It's very hard to explain. I think it has something to do with being a strong Christian before. I was completely encompassed by Christianity, which is what is expected from it.

Islam is a more practical way of life, as I see it, and not quite so emotional. Is that why I feel this way? Maybe I'm not supposed to be all-encompassed. I do think Islam is more logical and easier to understand than Christianity. Of course there are laws and rules that don't have easy explanations that must simply be obeyed. But those are no big problem and I will obey them simply because Allah says I should, and we will all find out on the day of judgement why we had to do those things. Some may simply be to obey Allah without question, and I think that is fine also. But the main tenets of Islam are easy to understand and are not full of the emotion and self-sacrifice of Christianity. The word Islam means submission to God's will. But inherent in that submission is a sense of self-worth because we are judged on our deeds and misdeeds. We are held accountable. This is a good thing, although of course we all need to pray for God's mercy because none of us is perfect.

I do think this cancer is a test to strengthen my faith, though, and I hope it can do other people some good, too, maybe through this journal or if others can see my strength. I hope that this tragedy can be used for good. Maybe this is what it takes to convert my family, for example. I will watch and wait and see.

A test...

August 27, 1987

I feel as if this cancer is a test from God. Maybe He is testing me to see if my faith will shake or not. Maybe He wants to strengthen my faith so I can make it to heaven. I'm going to try to become more consciencious about reading Quran and learning about Islam. I also want to go back on my diet and start exercising so I can feel more healthy. I hope I can spend time reading Medical Literature.


It's getting a little easier to talk about my Lymphoma now. I still wish peple wouldn't always be so concerned, though, I hate being treated differently than before.

I'm going on vacation next week! I hope we can have a good time and forget about illness for awhile. We are going to Eureka Springs, Arkansas for several days, then to Granite, OK to see my sister Janelle. The doctor says she and my other sister Lynda should come to Tulsa to get their blood HLA typed and my brother Ron should get it done in Ohio to see if they are a match for a bone marrow transplant. Mom thinks Ron has my blood type. Dr. Richardson has interviewed me about a job for next year which sounds promising. I could work 1/2 to 3/4 time and "write my own ticket" when it comes to what I want to do next year. I'm hoping I can work a few days a week, plus taking call every 3rd night sounds good.


I passed a point 2 days ago where I kept trying to cry all the time. Every time anyone mentioned my illness, I started to cry. I felt like I was going to explode and decided I really hadn't had a good cry since I was diagnosed. So 2 nights ago I went into my room and cried into my pillow. I wish I could have cried out loud, but Karen is still here and I would have felt funny, but I do feel better now. I'm truing to figure out if I'm in the denial or anger stage in grieving, but I'm not sure I can place it. I think it's closer to disbelief and depression. Mainly I'm depressed because I have cancer and I'm going to die probably sooner than I thought I would and I'll have to go through treatments and something is wrong with me and now people feel sorry for me all the time. Disbelief because I don't feel bad, I've always been healthy, and I'm really the same person I was 3 weeks ago, before my diagnosis was made. It's still hard to believe. I'm so young. Young people don't get cancer. Anyway I'm going to try to start from here and just take each day as it comes, because, who knows I may just outlive Jihad or anyone else, for that matter. I'm not sure if I should go through life thinking I'll lick this thing for good though, because chances are I won't, but I can always hope. I need to know my options. So far I understand that I could live a long time, so I need to continue "business as usual". I may need to schedule some outpatient chemo. I hope it won't make my hair fall out, but if it does, I can start wearing a veil since I'm supposed to wear it anyway.

Staging...

August 22, 1987

I took off work and went for my CAT scan and chest x-ray. The CAT scan was not bad at all except for the "breathing exercises" where you have to hold your breath during the actual x-ray for a few seconds. The radiologist had to inject dye into my vein during the exam and I also had to drink Barium before the test. The whole thing took about 30 minutes. It was hard to lay still that long, and before we were done I had to go to the bathroom something awful.

Around noon I went to get my bone marrow done at Dr. Smith, the oncologist's office. I won't say it didn't hurt, but it wasn't too awful. The worst part was when he was injecting the numbing medicine down into the bone. It burns as it goes in but once it was numb, the rest wasn't too bad. It sure was a strange feeling though.

After the bone marrow, Dr. Smith told me the CAT scan showed "enlarged nodes around the aorta in my abdomen and pelvis" meaning stage III at least. This doesn't necessarily mean any worse prognosis, however.

One thing I noticed during these tests was that the doctors try to give me the VIP treatment. When I went to the office, I  didn't have to wait, and the surgeon even had me wait in his office and gave me a diet 7-up.

I called Dr. Smith and he said there were 20% lymphomatous cells in my bone marrow, therefore stage IV. He is going to talk to his collegues and and get back with us to map out a "life plan" or at least a "one year plan" so I can rearrange my schedule if need be.

A couple more things I must mention. It seems like everyone and their dog now knows about me and is terribly concerned about my health. If you ever want to be very popular and be talked about alot, get cancer at a young age. As the Pediatric oncologist Dr. Paul put it, "Bad news travels fast". I'm getting tired of having to tell people all about it, but I also feel strange when people don't bring it up, like they are avoiding it or they don't know. If they don't know, I feel like I'm hiding something if I don't tell them. I also noticed that I've been crying more about it the past few days. I haven't really been able to have a good cry yet, actually, because a friend of ours is staying with us and I haven't had much time alone. I espeically cry when people ask about having children. I guess it's because deep down I'm afraid I won't be able to, and I really want to have them. That bothers me more than the thought of chemo, etc. What bothers me most is that I feel robbed of my normal life. I feel like everything I do now will be harder, and will be weighed against how many years I have left or how it's going to affect my health.

Another thing Dr. Paul said was, "The best thing you can do for other people is to let them do you a favor". Almost everyone who talks to me asks if there's anything they can do. I know, people feel helpless and don't know what to do. When I asked one of the residents to take call for me the day after my surgery, she said okay, but I took call for her later in the month. A few days ago she called and said she wanted to go ahead and take the call that I had swithched. I tried to resist, but decided to take his advice and let her do it. I'm on call with her tonight and she sent me to bed early because I was tired. See, it's happening already.

My husband Jihad is also having difficulty right now. He has problems with ulcers and stomach upset. He is not eating well and has been very uptight, and I'm woried that his ulcers will flare again. He is getting angry at the Oncologist because he doesn't seem to be in a hurry to get anything done right away. I know he told me there was no urgency. But because it's stage IV, Jihad seems to think it needs to be dealt with right away. I know he's frustrated, but gee, it's me with the cancer, anyway, not him. I'm worried about him making himself sick over me. I hope he gets over this initial stage okay.

I hope that sooner or later things will settle back into some sort of routine where I don't have to think about the fact that I have cancer all the time. I wish I could get to where it was just routine and I didn't have to deal with people's pity anymore, and asking with a little more emphasis and a little more interest when they ask, "How are you doing?"

I'm so glad I have vacation after next week. I really do need a break so that Jihad and I can sit and talk for awhile and relax and enjoy ourselves. We also need to decide on what's next in the immediate future, and if nothing, then I want to try to get pregnant soon.

Thinking of posting my journal entries

I was looking through my two journals I started when I was diagnosed, the first dated Aug 15, 1987 and the 2nd ending in 1997. I just realized that's 10 years of journaling!!! At first, I had wanted to just type the journals, which are hand written, and try to publish them, but since they are somewhat dry and personal and long winded and repetitive, when I tried to get people to read them, I think they went into a coma. I have been looking through them though, and maybe it would be interesting to type in some excerpts of these journals from time to time, since they give a good insight into what I was thinking and feeling and doing at the beginning of the cancer and beyond.  So I'm going to go dig up the first one and give it a try. If I try to type a blog for each journal entry, that will still be a lot of blogs!!!!!!!


August 15, 1987   

I have cancer. I still can't believe it's true. I never thought I'd use that word in reference to me and I'm not sure it has sunk in yet.          

I am 27 years old, married, no kids. I noticed an enlarged lumph node in my neck about a year ago,but it didn't cange or get bigger so I didnt do any thing about it. Then I noticed more nodes in my neck and also in my armpit so I saw the doctor who suggested a fine needle biopsy. This was done 4 days ago and was not normal, so I had surgery, a lymph node biopsy, the next day. I found out the results yesterday: "nodular poorly differentiated lymphoma". It's incurable, but a slow growing tumor so I have some time left--5, 7, 10 years. The doctor told me, "Who knows? Maybe they will find a cure by then?" The only other hope is bone marrow transplant.

One thing that makes me unique as a patient is that I'm a doctor. I'm doing my last year now as a pediatric resident and sometimes I think I know too much. My husband is a Civil Engineer and is having a harder time understanding. I want to use this diary to write down my thoughts, feelings, struggles and what is going on in my mind during these next years.

My next step is staging, 3 days from now. Chest x-ray, CT of the abdomen and bone marrow biopsy. I am not looking forward to that. I've done a few bone marrows myself and they are very painful. After the staging it will be decided what to do next. The doctor said some of these tumors go away on their own and some get worse quicker than others. One thing I hope to do is to be able to have a child. I hope to be writing one day that I've had a baby, because that would bring me and Jihad (my husband) the most joy. I don't think it would be bad if my baby had to be raised just by Jihad or by a step mom. I do want to bring someone new into the world, however, someone who is a part of me and Jihad.

What surprised me the most about this cancer stuff is that I've been feeling good. I really haven't been more tired than usual or having any real symptoms. I guess it goes to show that our existence is never guaranteed and we just have to live one day at a time. I'm still not quite sure what I'm going to do, but for right now, I don't want this to disrupt my life too much. I may change my mind later, but the only things I've changed so far is starting this diary, and I'm thinking about things a little more than usual. I hope I can "deepen my existence" a little this way, and make my fewer years here more meaningful. 

The Diagnosis

I remember it so clearly. My biopsy was done and I went back to the Oncologist to discuss the results. My husband came with me. It was strange because I got to wait in his office until he was ready for me, and they gave me something to drink. I really felt like I was getting the VIP treatment, probably because I was a doctor.

He told me it was Nodular Poorly Differentiated Lymphoma (I think now it's called b cell or small cell, they change the names every few years just to keep everyone on their toes). It is very slow growing, but very hard to get rid of.

The thing is that the faster gowing your tumor is, the easier it is to treat because most treatments attack the fast growing cells. This is why your bone marrow gets depleted and your hair falls out, because these cells are growing faster than other areas of your body.  Since my tumor cells are growing slowly, the treatments can get some of them, but not all, which makes this kind of cancer INCURABLE. I can live without much problem for 5-7 years, but treatments will have to get more aggresive with less results as time goes on. He told me that if I were 65 (much more common in older people) than he would know what to tell me--treat any symptoms and if no symptoms just watch and wait. Since I was 27, he decided he would talk to his collegues across the country and find out what they thought and get back to me.

Problem: Besides being young and newly married (4 years), we wanted children. I really felt like I didn't want this disease to change my life any more than it had to. I wanted to stay in Residency, work as a doctor, and have children, especially if I had a few good years left. I wanted to leave some part of me behind for myself and for my husband.  The doc said the lymphoma would be no problem to having children, but I should think about having them sooner rather than later, since you never know when I might need chemo and some chemo makes you infertile, plus I wouldn't want to have chemo during the early part of pregnancy.

As we were leaving the doctor's office, I remember seeing one of my fellow residents who was working at the doctor's office for one of his rotations.

"What are you doing here?" he asked.

"Well, I have cancer," I told him and broke down crying. I never thought that word would be associated with me. Suddenly I was measuring my life in small amounts of years, not decades, grandchildren, retirement, etc. Really strange. You really want to deny it all, hope it was a bad dream and wake up and be healthy, etc.

It's gotta be a mistake!

I was working as a medical resident in Pediatrics in 1987. I noticed a lump in my neck, so I asked the Pediatric Oncologist what he thought.

"Has it gotten bigger lately? Does it hurt?"

 No, I answered so he felt like it wasn't anything important. Later I noticed a smaller lump right next to it, so I asked one of the nurses what she thought.

 "Do you have any enlarged lymph nodes anywhere else?" she asked.

I really hadn't thought about that, so I checked, and sure enough, I had some enlarged nodes "glands" in my armpits, too.

"I guess I better go see a doctor", I thought.

Of course I didn't have one, because medical residents never see doctors and don't have time to get sick. When we do, we treat ourselves. So I found a doc, and went to her. She felt that the neck lumps were from when I had Mono in college, and the underarm ones could have been irritation from shaving.

"Just keep an eye on it, and if they get bigger, or change, let me know. Otherwise come back in 6 months". OK, cool, I can do that easy.

The next day, my doctor called me at home (Uh oh, not a good sign!).

"You know the more I think about it, the more I think you should get a needle biopsy of the lymph node in your neck just to make sure everything is OK. That way we can all feel better that it's nothing".

 OK...still sounds okay to me, no reason to worry, right? The biopsy was scheduled.  Not a big deal, a little numbing medicine, a medium sized needle (I couldn't watch since it was on my neck, too bad!) pull out a few cells, wait for results.

She called back in a few days. "The biopsy is suspicious for Lymphoma. We need to schedule an open biopsy (a small surgery where they take out the lymph node to take it to the pathologist for examination) to see what's going on. Suspicious doesn't mean it's Lymphoma, though, so don't get worried yet."

Yeah, easy for her to say. I'm 27, been married for 4 years, no kids. My husband and I wanted children and had been trying for a year. I had a miscarriage the year before plus it's really hard when you are on call at the the hospital every 4th night. I prayed, and hoped that it would all be a mistake. I'm healthy, nothing wrong with me. I had my tonsils out when I was 5 years old, but no other surgeries. Meanwhile, I'm still working as a resident and really don't have time for any of this.

Intro

I've been wanting to write my life story for a while, without much success, then thought maybe blogging would be easier and more "modern". but as an "old Lady" who is not very techno savvy, bear with me. The gist of the story is that I was diagnosed with Non Hodgkin's Lymphoma in 1987 and told I had 5-10 years to live. 25 years later, here I still am. Sometimes I think if I can tell my story, it will give hope to those struggling with this particular cancer and cancer in general. I'll post again soon after I've figured out how I'm going to do this.