CureHodgkins.com Patient Diary
THERE AND BACK WITH HODGKIN'S

PART I:  Diagnosis: January/February 1993
W R I T T E N   M A Y   1 9 9 3

My story begins on January 25, 1993. A cold, crisp day here in Philadelphia. No snow, just clear skies and a chill in the air.

I was 24 years old, and heading off to school that morning. It was my first day of my last semester of college. I was attending a seminar that would explain both the duties of student teaching and graduation forms and procedures. I'd received my student teaching assignment in December, but had no way of preparing for it because I only knew what school I was to be at, not the grade I was to be teaching.

I sat through the seminar, taking notes, talking to old classmates, and met the supervisor for my school and the other student teachers that would be there. I wasn't feeling well, still couldn't shake the cold that had been plaguing me for what seemed like months. But all in all, not feeling too bad, either.

After the seminar was over, I took my notes and headed to the Health Service Center, to get the tuberculosis test I'd had done the Friday before read. It is required that anybody teaching in the schools have a clear tuberculosis record. After waiting several minutes, the nurse read my test site. She said it seemed to her there was a little swelling that shouldn't be there, and she asked me to wait and see the doctor.

I started to get a little bit nervous, I mean, Tuberculosis? Was that possible?

The doctor brought me into her room and she examined me, and she said she could feel tumors in my neck. Had I noticed them? No... on occasion my neck was sore and I thought I had swollen glands.. but tumors? Tumors?

She said that the symptoms of active tuberculosis, which is very rare, were a chronic cough and fevers. Did I know anyone who had the disease? Did I know if I had been exposed? No, but I have been serving practicums in the schools for semesters at a time, anything is possible. I was beginning to get frightened, thinking of my cold that seemed to be getting worse rather than better. The tumors could be tuberculin tumors, or they could be cancerous. She suggested I go to the hospital as soon as possible to get an X-ray of my chest, which would show if I had a tuberculosis problem.

I recall the ride home on the bus so clearly that day. I was quite upset, and scared. I was wondering what was going to happen with school.. I wasn't even sure what the timeline was if a person was sick with tuberculosis. I'd worked so hard to get to that point, and there I was, 2 days before I was to start student teaching, sick for who knows how long. (back in those days it never occurred to me that I could be seriously ill, as in life threatening). Somehow I made it through the whole bus ride, and the 10 minute walk to my house. I don't really know how.

I walked in the door, threw my stuff on the chair, and promptly burst into tears. My boyfriend was upstairs, he came down the stairs.. what's the matter? what happened? Of course I couldn't really reply, I was choked up and shaken. He thought somebody did something to me, and it took me several minutes to calm down enough to tell him what happened. We decided it would be best not to worry about it until we got the X-ray and knew for sure one way or another. I was 24 years old.. how could I be sick? Of course young people get sick all the time. You just don't expect to. I didn't even have health insurance.

The next day, January 26th, I went to the hospital to get the X-ray done. After it was taken, and I redressed, I asked the technician if I should stay or go. He told me I could go if I wanted, but if I wanted to wait for the results I could. Otherwise, I could just call my doctor. Since "my doctor" was the Doctor I just met the day before, and since I was rather anxious about what the results were going to be, I decided to wait. About 10 minutes later I got another sign of bad news.

The technician came out again, looking for me. I stood to walk over to him, and he said "We're not ready for you yet, the Doctors are still reading your chart, but we wanted to make sure you didn't leave. Just wait a few minutes and the doctor will be out to talk to you."

I've read in novels the expression "my heart sank" but I'm not sure I ever really felt that sort of thing until just about then. I'd been telling myself there was nothing to worry about, all was ok, but this was a clear cut sign that something was very. very wrong. I waited in the little waiting room, wishing that I'd brought John back with me instead of leaving him to wait in the big waiting room. Finally, a doctor came out. "Miss " he said. " I'm Doctor L---and I just read your X-ray. You have an abnormal X-ray, and it is important that you go to the emergency room and be examined by one of the doctors there. I'm going to call ahead and tell them that you are coming."

OK. I retrieved my boyfriend from the waiting room and went to the emergency room. (actually we got lost in the hospital and had to get help to find the emergency room). Waited there. Finally, they called me back, and two doctors came in to examine me, asked a million questions, then went to look at my X-rays. They returned wearing masks.

The masks were because they suspected I had active tuberculosis, and its highly contagious, so in order to protect themselves, masks had to be worn. They examined me again, asked 50 million more questions, then let my boyfriend come in, wearing a mask.

There wasn't a room available for me, so I had to stay in this little room in the emergency room overnight. I met a lot of doctors. The next day I was moved to a private room up on the eighth floor. A zillion tests were done, blood drawn a zillion times, a zillion questions by a million doctors. Days passed, and still there was no firm diagnosis. They took samples from me, but they all turned up negative. Finally it was decided they would have to perform a biopsy on one of the tumors to get a diagnosis.

The operation was done on February third, my boyfriend's birthday. I couldn't get to a card store, obviously, and a gift was out of the question, but I made him a card out of paper I had, stuck a little rhyme in it, etc. Hard to celebrate your boyfriend's birthday while getting ready to get operated on.

It took until Friday, the fifth of February before they were able to diagnose my condition. At this point, I'd talked to my professors and they were waiting on the outcome. I'd learned from the doctors that if I had tuberculosis, I would need to take medicine for a year, but I would only be a danger to other people for 2 to 3 weeks. Therefore, it was possible that I could still get my student teaching in in time to graduate in May. On that morning, the doctors came in and told me that a firm diagnosis had not been made, but that the tuberculin tests came up negative. I didn't really grasp what that meant at the time. Of course the question is, if it isn't tuberculosis, what is it?

Several hours later I got the answer. I didn't have tuberculosis at all, except I probably was exposed to it somewhere down the line and I should take medicine for it anyway. I had Stage IVb Hodgkin's Disease, a form of cancer of the lymph nodes.

Well, it's sort of hard to describe what hearing something like that does. If someone had asked me a year ago how I would react to such a thing I probably would say I'd break down in tears, or be so scared I'd be speechless or something like that. In reality, I just was amazed. It seemed impossible that the nodes in my neck, and the masses that were supposedly on my lungs were cancer. How could that be? I just was amazed. I said "this is unbelievable." and felt more or less detached, numb. And I've pretty much felt numb and detached from it ever since then, which is basically a good thing, for in the moments that I am not numb I am very frightened, which is no way to spend your days.

I met the oncologists, we had a meeting with my parents and my boyfriend and I and they explained the route of treatment they recommended. A week later I started on Chemotherapy. I was released from the hospital on February 17th, 22 days after my admission.

PART II:  BMT, September 1993
W R I T T E N  A U G U S T  1 9 9 3

After six cycles of chemotherapy, my CT scans still show masses on my chest and in my neck. On July 7 I had a meeting with my doctors, and was told that if I continued with standard chemotherapy, my chances of being cured stand at less than ten per cent. Without a cure, it is estimated I could live about 1.5 - 3 yrs. My other option is to try a procedure called a Bone Marrow Transplant.

There is no cancer in my bone marrow, so I do not need a donor, I can be my own donor.. which is good for me since I have no whole siblings, which is where you need to get a donor match from (unless you are fortunate enough to find an unrelated donor). First thing, I will be having an operation called a Bone Marrow Harvest, which is where they take the BM from, and freeze it. They will also be placing a catheter in my chest at this time to use for IV's later. This will take place on August 26th.

I may be going home the following weekend, or I may be staying straight through in the hospital - it depends whether or not they have a bed available or not. In any case, within a few days I will be re-admitted, and they will be giving me high doses of chemotherapy in hopes of killing the rest of the cancer. They give 10 months worth of chemo in 4 days. The effects of such high doses of chemo are negative as well as positive. The good part is, hopefully, it will kill all the remaining cancer. A cure. The chance of this lies at 30 - 50%. On the down side, it also kills out all the good blood cells, wipes out the immune system, and possibly can harm/debilitate essential organs like heart, lungs, kidneys, etc.

Because of the effect on the immune system, 2 days after the chemo is done I will get the bone marrow, and then be placed in a bubble type room, with special air flow designs and everything is sterilized. The bone marrow will be thawed out and given back to me through an IV. The point of this is so that it will mature and grow new blood back, to replenish the white cells and red cells and platelets. It takes a few weeks for this to happen. During the time they are waiting for the blood cells to mature, I will have to stay in that special room and get lots of antibiotics and hope that everything goes well and I don't get a bad infection of any sort.

If all goes well, I'll probably be released from the hospital after about a month. When I go home, I will have to stay at home and minimize contact with anyone for about 100 days. I will have to wear a mask if anyone is around me or if I have to go out. It will take about a year for my body to get back to normal. Since I am not allowed to be around elementary school aged children, I have no idea how long it is going to be before I can go back to school and finish up my degree. At least a year from now, maybe longer. If ever.

As you can imagine, this hasn't been the easiest decision to make, and it's hard to walk into it.. I feel really good right now.. it's hard to imagine that my choices are so limited and that I have to put myself into a situation where I can potentially be so sick just to get better. But, such is the case. it doesn't pay to think on it too often or to thoroughly, since I can't change the options I have and I can't make them any better by thinking about them. So, I am just sort of living day by day here, moving along through the remaining weeks and trying to be strong enough to get through it all. What else can I say?

Reflections from Post-BMT, Written ~1994

The transplant was done on September 10, 1993. I remained in the hospital for 35 days. I was very sick, but fortunate enough to not have any serious complications. In early January 1994, I began to experience "b" symptoms again, mostly nightly fevers. A CT scan revealed that there was still a considerable amount of disease in my chest and neck. The plan to have "clean up" radiation was scrapped, and instead I had a "full dose" of radiation, in an effort to be cured.

Radiation was very difficult for me. I expected it to be much easier than it was. I realize that after six cycles of chemotherapy, followed by a bone marrow transplant, I wasn't in the strongest position when I started the treatment. I was sick, and sad. The Great Ice Storms on 1994, which anyone living in the Atlantic region at that time should recall, were going on as I was getting my Radiation treatments. It was quite an ordeal to get to the hospital every day, and then quite and ordeal to be there, followed by an ordeal of being home again sick.

The following March I began to have lung problems, which eventually was diagnosed as a residual lung disease problem from the radiation given. I was hospitalized for awhile, then released on steroid treatment using prednisone, which is a difficult drug to be on for extended time. The worst part about the lung disease was that it marred my CT scans and other tests, making it impossible to tell without surgery whether or not I was in remission from Hodgkin's Disease.

PART III:  Remission, Summer 1994
W R I T T E N  A U G U S T  1 9 9 4

The CT scan of August, 1994 brought on the good news that I was, indeed, in remission. I was greatly relieved. I had scheduled myself to finally complete my student teaching in the Fall, 1994 semester, and had been anxiously awaiting word on whether or not I could manage this.

I did manage it, although it was very hard. I was still on prednisone, which left me weary and sometimes emotional. I was assigned to a second grade class, which can be challenging, but it was so wonderful for me to have the teaching experience, and I counted myself as fortunate to have the opportunity. I struggled through, enjoying the ups and downs of such an experience.

On January 27, 1995, two years to the day after I was supposed to begin student teaching, I received my B.S. in education.

PART IV:  Recurrence Scare, April 1995
W R I T T E N  A U G U S T  1 9 9 5

On November 1, 1994 I took my last dose of prednisone, after working for several months to ease off of it. Each time you decrease this drug, it can bring on side effects such as muscle soreness and joint pain, as well as mood swings and irritability.

I had been on the high doses of prednisone to combat the fibrosis I had from radiation. Around Thanksgiving, I started having a cough that was significant enough to cause me to worry. The X-ray showed a spot on the right lung.

In December I had a CT scan done.. showed same spot, slightly larger. In January, I had an MRI done, showed same spot, larger still. The doctors said that it appeared to be growing, and recurring HD was a significant possibility.

We went around and around on what to do. My oncologist thought I should get more radiation; my radiation oncologist didn't want to do it without a firm diagnosis. He wanted the pulmonary doctors to do an open lung biopsy, an idea my oncologist (nor I) was not very fond of. We finally settled on doing a bronchoscopy, mostly to determine that the spot definitely wasn't something infectious, like TB.

I was particularly frantic over the procedure. The year before, while in the hospital with the initial bout of pulmonary fibrosis, this test was done and resulted in an injury to my lung. I was left dependant on oxygen for several days, while the threat of having chest tubes put in to help inflate the lung loomed. Luckily, my lung healed before I needed to have that done, but even so I was feeling rather gun shy about pressing my luck for a second time. Still, faced with the alternative of having an open lung biopsy done, I felt I had little choice.

We did the procedure in March 1995, the results being negative for everything, but they really weren't able to get a piece of the mass because of its position (it was/is located on the right side, towards the center, where it is a little loop part.. they couldn't get the scope to make the turn without possibly puncturing the lung - again).

They thought it was HD, not just because of the increase in size, but because the positioning of it was not typical of scar tissue. The doctors were leaning closer and closer to opening up my chest to get a specimen, when I went for a second opinion at another hospital. The doctor at the other hospital said he thought the increase was over dramatized by using two different tests, the MRI and the CT, and recommended that we wait another 6 weeks for another CT scan. It sounded like a good plan to me, and my regular oncologists concurred.

So, in late April I had another CT scan, and the spot on the lung was smaller. With great relief, everyone cautiously decided that it must be a patch of scar tissue or fibrotic tissue, a piece of permanent or semi-permanent lung damage from the radiation. A follow-up scan in June offered the same results. The November, 1995 X-Ray was again identical.

PART V:  Coping, July 1995
W R I T T E N  A U G U S T  1 9 9 5

In some ways I have found the struggle to return to a "normal" life more difficult than the struggle to fight the disease. When going through difficult treatments so much effort is going into fighting the disease that other problems in life become pushed to the wayside.

Now I find myself faced with trying to rebuild a life for myself, deal with insurance issues and the dreaded pre-existing condition, and regain the physical strength and mental drive that has suffered a good deal through this time in my life.

I find this more difficult than I would have thought it to be, and it is a struggle for me to move forward. I would like to hear from other cancer patients who have recovered and found their way in life again.

PART VI:  And life goes on, September 1995
W R I T T E N  S E P T E M B E R  1 9 9 5

It seems that about once a week I get an annoying heaviness in my chest. Shortness of breath, I guess we could call it. It isn't incredibly debilitating, but somehow sends me into a panic of wondering what is going on, why is it happening? what does it mean?

I've been told that it is to be expected that I'll have good days and bad days. That makes sense.. why not? Perfectly healthy people have good days and bad days. I am monitoring things rather closely, getting the scans and X-rays done when I need to, and seeing the doctor for follow-up exams when I am supposed to. I need to keep reminding myself of this. I find that I'll have a few good days, and then a few days of just not feeling well, which is compromised by a bit of panic and a sense of depression that I'm just never going to be able to be secure again.

Funny that when I was preparing for the BMT, and going through such things I was able to keep a handle on the situation pretty well, and now, when I'm doing well, I feel anxious and panicky. Is that fear of the unknown?

I've moved up my activity scale pretty well. I am able to walk much more now, and my stamina for getting through a day seems to have improved. My doctor called my progress "incredible". It doesn't feel that incredible to me. I still have trouble doing half the things I want to do. When I push myself to go farther, I can do it, but I will be so tired for three days afterwards that it hardly seems worth it. There are some days that I struggle to get out of bed.. and others that I fly out and glide through the day. I think the inconsistency is most rattling.. like I just don't know what the next day is going to bring.

I passed my two year BMT anniversary fairly uneventfully. Nobody remembered, not that I guess they should. It's an odd sort of day. I can't decide whether to rejoice over it as a milestone, or to cringe at it as a reminder of all that is past, and all that is still uncertain. Half empty or half full?

PART VII:  A New Year, January 1996
W R I T T E N  J A N U A R Y  1 9 9 6

It's January again, a difficult month. I fall into the "anniversary" pattern, thinking things like "three years ago I was getting ready for student teaching, little did I know..." I'll do it again in September, when the BMT anniversary is, but January is more startling. I still look back on the first few weeks of January 1993 as the last days of my "normal" life - even though I know that I was a sicker person then than I am now. What I'm saying is that I know better, and I know that I need to move on from it, but somehow I keep managing to get stuck it in, just like our cars all along the East Coast of the US are stuck in the snow. We can work at it and get out, but it isn't easy.

Last November I began pulmonary rehabilitation, trying to strengthen my breathing muscles and body as a whole in hopes that I will be well enough to work again, ideally by mid spring 1996. I am making some progress but it is slow-going. The truth is that I'm so tired, it is hard to get my heart into it. The drive and will to live that pushed me through chemotherapy and the BMT in 1993, radiation and fibrosis, and the motivation to complete my education in 1994 seemed to wither away to nothing in 1995.

I never really managed to be angry or bitter, emotions that I've seen both help and hinder other cancer patients. As I recall it, I did the best I could, and took a whatever will be will be attitude when I could, looming into a sad resignation when I was unable to feel cheerful. 1995 is the year that it caught up to me emotionally, I suppose. While I plugged away through the recurrence scare in early 1995 and attempted to keep a strong outlook, I secretly questioned if it might not be easier to just have it happen, and be done with it. In late spring/summer, I even wrote a story about a woman who knew she had recurrent disease, but intentionally hid it and did nothing about it. It is a depressing story, but it was therapeutic for me - the main character is so resigned, pathetic and misguided that I know I don't want to be like her!

By mid-summer I was feeling particularly lonely dealing with the disease. Seems that those around me, even those closest to me, now seeing that the crisis was over all managed to put it behind them, while the issues and fears stayed with me all the time. It had been talked out to death by 1995, how many times can you go over the same issues? I set up this page looking for empathy and reassurance from fellow cancer patients online, and was not disappointed. As I later added to the beginning of this page, the response generated from it has been very helpful and my heart goes out to so many people who are bravely dealing with the same issues I have dealt with, and in some cases with so much more. Again I thank you for your replies; they helped quite a bit.

The fall was difficult as well. I thought I was finally strong enough to try working part time, figuring that once I got going I would be able to build my strength as I went along. I was very wrong. In a month period, in late Sept-Oct, I attempted working a few days as a classroom assistant. When that failed, I tried a temp job in an office environment, and was not successful there either. I was stunned by this, somehow I thought I was stronger. I fell into a sort of depression, doubting my abilities and reflecting on what opportunities might be left for me. It looked bleak just then, but I visited doctors and eventually got set up in the rehabilitation program I am in now.

Now it is a new year, and I am trying to put the weariness of 1995 behind me, even though I know 1996 is not going to be easy. I am hoping that it will be a year of rejuvenation for me, and though I'm not confident enough to predict where I'll be a year from now, I plan to try to make something happen for me this year, so that I can stop mourning the person I was in 1992, and move my normal life back into the present.

PART VIII:  September 1996
W R I T T E N  S E P T E M B E R  1 9 9 6

I've just passed my three year anniversary of the BMT. My entry last July was short, I was just so impressed with the book that I really felt I needed to share it. I wanted to wait until now to share my news, because I was feel superstitious about counting chickens before they were hatched.

Back in January I made a promise to myself that I was going to put this behind me, and move on. I've done pretty well. In July I found a full time job, and have been working full time for two months now and faring relatively well. It isn't teaching, and I don't know if/when I'll feel ready for that, but it is a big step back into mainstream life.

Even better, in late June I turned to my fiancé and asked him what were we waiting to be married for? We couldn't think of a reason, and so we decided to move forward with those plans. We planned a Las Vegas wedding, which just passed the beginning of this month. It was wonderful, and I am feeling so thankful right now. I am surrounded by people who love me, and I have things to look forward to. I wish the same for you and your loved ones. I made a short speech on my wedding video, asking my family and friends to take a minute to remember all of the doctors and staff who helped me get well. It ended with this sentence, which is what I'd like to pass on to anyone who might be reading this page while feeling depressed, or hopeless: "Three years ago this seemed impossible".

PART IX: May 1998
W R I T T E N  M A Y  1 5 ,  1 9 9 8

Things are going well. I feel better than I have felt since 1992. For the first time since I was diagnosed, I really feel like my life is moving on. I don't think about cancer or recurrence most of the time. My professional life has progressed in such a way that I feel that I am doing something productive with my life, even if it is not my original plan. Maybe that is okay. I think I have gotten past those feelings that I am missing out on something, and that I am struggling and struggling to just survive.

My husband and I survived our first year of marriage, which was difficult and shaky, at best. I think we will be ok. I think I am ok. I'm going to be 30 in another month, I can't believe it. I feel so old, I feel so young, I have all of those ups and downs that I think everyone has. I think my life is normal. This is terrific and exciting.

The only down side is that I am due for my annual CT scan now. I don't have any symptoms and there is no reason to think that anything is wrong, but I am really afraid to go for the test, in a way that I haven't felt scared before. I always held my breath before, thinking.. "ok, let's wait and see." Now I don't want to wait and see. Of course I would want to know if there is anything that needs attending to, but I think that I am maybe at my most vulnerable point now, simply because I've finally let go of my hesitations, and have jumped back into life with both feet. I'm not prepared now for anything to be wrong. So, I will just say a prayer or two, make my appointment, and keep my fingers crossed.

How can you help but be terrified?

PART X:  August 1999
W R I T T E N  A U G U S T  2 6,  1 9 9 9

I got through the 1998 CT Scan unscathed, and now am getting the nerve to go for the 1999 Semi-Annual check up and inevitable CT Scan. This is a big one; will be 5 years in remission. Some days I get so involved with marriage, work, and day-to-day life that I actually forget about Hodgkin's Disease entirely, but some insecurity always comes back to me just when I think I've escaped. Particularly when it's time to go for these appointments and scans. I know I just need to think positive, and do what I have to do, but I find it so so hard to do.

Reading back through this file, I guess it is as it is with any diary, looking six years back into your life, some things seem so distant it's as if they happened to someone else. On the other hand, certain memories rush back at me with such force it might just as well have happened this morning.

If you've made it this far with me, thank you. If nothing else, I hope that sharing my experience will help someone out there feel less alone. You can recover. Life really can go on.

PART XI:  August 2000
W R I T T E N  A U G U S T  1 8,  2 0 0 0

I had my most recent CT scan in January, 2000. It was fine, although I had a scare when my primary physician became alarmed about a mass on the film near my pancreas. Later confirmation from my oncologist showed that this was indeed scar tissue, and in fact has become smaller since the last scan.

The worst part about that episode was that the timing was unfortunate. I was on a prolonged business trip overseas when I received my doctor's message, and it was very difficult to organize all of the logistics of checking from so far away. Not to mention emotionally trying. I thank Heaven for my mother, who helped save the day running between doctor's offices and transporting films. Thanks, Mom!

A favorite aunt of mine has recently been diagnosed with ovarian cancer. I think of her often, and try to remember what things made me feel best when I was ill that others could do for me. It is hard to know what to say or do sometimes, and everyone is so different, and it really does feel like you're walking on eggshells, even with the most gentle people. Well, my friends, so far so good. Life is busy. Life is good. My best to you.

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