Wednesday, June 4
My husband Mike received the phone call that he had been preparing and working towards for the past two years. A major airline offered him a job as a Flight Officer (dependent on passing a physical). We were so excited. He has worked so hard.

The following morning I was scheduled for a CAT scan to learn more about a lump I found near my collar bone. That afternoon, about 24 hours after hearing about Mike's job offer, I talked to my doctor's partner and learned that I may have a type of lymphoma. Since my doc was out of town for the weekend, I had to wait to talk to him on Monday before we could proceed with the next step in determining what was up.

When we talked Monday, he told me we needed to do a biopsy the next day. My parents knew about the CAT scan and were waiting to hear from me. I called to let them know about the upcoming surgery. Less than two hours later they were driving to Green Bay, Wisconsin to catch the next flight to Texas. My dad said "You don't need to do this alone." He was right. That's what family is there for - celebrating the joys in life and helping each other through the tough times. That's when I agreed that they should come down right away. We needed help. Mike would certainly need someone to be with while I was in surgery and sleeping off the anesthesia. We didn't know what the news would be.

Tuesday, June 10
The surgery went well. We waited for two days for the pathology report. My doc's suspicions were confirmed. I had nodular sclerosing Hodgkin's Disease (HD). They told me that if I had to have any type of cancer, this was the one to get. It is very treatable and curable. Another CAT scan, this time of the abdomen, indicated no additional cancer there. They said I was a Stage IIA (IV being the most advanced). My oncologist (couldn't believe I had an ONCOLOGIST!) recommended a treatment plan of 8 months of chemotherapy. He said my prognosis was very good.

We knew Mike would be gone for two months for training. We also knew I would be sick from the treatment. Mike, my parents and I decided that it would be best for us to move in with my parents for a while. Mike could commute out of Upper Michigan. I'd have family around even when he was gone.

The Cancer Patient - The Counselor: If you are thinking about getting cancer, you might want to get your masters in counseling first. I suppose that sounds a little sarcastic. But, it's true. One of the toughest things I have had to do since being diagnosed, is comfort others who are "freaked out" that I have cancer. I found myself explaining over and over again that "If I was going to get any cancer this was the one to get", "I'm going to be fine in the long run", "I'm not going anywhere soon", "This is just a speed bump in the journey of life". It was exhausting. I'm not complaining. I'm just mentioning what was tough on me. I genuinely appreciated every phone call, note, and flower I received. I truly feel blessed to have so many great people show concern for me. But at the beginning, it was overwhelming and tiring.

When most people hear the word cancer, they think "death". That's not true these days, especially with Hodgkin's Disease. It was very important for me to make sure that when friends and family thought of me, that they thought POSITIVE THOUGHTS. I felt that if they thought sad or negative thoughts, these thoughts would somehow work against me during my recovery. If we all think positive together, then I'll do better quicker. That was my theory. So, I did my best to make sure everyone was positive and knew I was positive. As far as I am concerned, there was no other choice than to be positive. Being negative or downhearted wasn't going to help!

Sunday, June 22
We packed up the car and headed for The Mayo Clinic in Rochester, MN. It was surprisingly easy to get an appointment. My mom met us there. I brought my CAT scans, X-rays, pathology report (including slides), and medical records. I thought it would only take a few days for them to complete my diagnosis and get started with treatment. I assumed it would be similar to what my TX oncologist suggested.

Tuesday, June 24 - First day at Mayo
Mom, Mike and I met with my new doc. He works in the lymphoma clinic at Mayo. (I couldn't believe I was at the LYMPHOMA CLINIC! What was I doing there? I felt totally healthy.) "Dr. P." was wonderful. He went over my medical history and did a complete physical exam. He said he wouldn't say I had Hodgkin's until his pathology department told him I had it. He was starting from scratch on my diagnosis. That was OK with me. That's why I went there. They are the experts. When he asked if I had any symptoms (like night sweats, weight loss, or itchy skin) I said that I was totally healthy until he told me otherwise. That got a smile out of him. He ordered up blood and urine test and another chest x-ray. He said a Mayo radiologist would review my CAT scans.

I took a minute to ask the doc a few questions about himself. If my life was to be in his hands, I needed to know him and believe in him. I wanted to know what kind of person he was. Would he be easy to work with? I asked him, "Tell me a little bit about yourself. Who are you?" He told us where he did his training, where he had worked, that he'd been at Mayo for over 25 years and that he had 4 daughters and several grandkids. He had family pictures proudly displayed on the wall of his office. Family and people seemed important to him. That made me feel comfortable. He seemed like a good guy.

After our appointment, I could tell that Mom and Mike were impatient. This irritated me a bit. Other than that, I was feeling pretty good. Very positive. I felt lucky to be treated at the prestigious Mayo Clinic. I believed in the care before I even got there. My feelings were reinforced from the moment I checked in at admissions. These people knew what they were doing. I had nothing to worry about. This was very important to me since I had recently been treated by a doctor (Dr. Dork, the fertility specialist) I didn't believe in. I felt like I had to be one step ahead of him at all times in order to get good care. And, since I didn't go to medical school, that was a pretty tough job - impossible even.

Wednesday, June 25
Dr. P. reported the following: radiologist did not finish reviewing the CAT scans, blood work looks great including white blood count (WBC), liver function, and a bunch of other stuff I can't remember, new chest X-ray shows nodules (tumors) on both sides of the chest. He ordered up the dreaded bone marrow biopsy for Thursday. It's supposed to really hurt.

Although Mayo had the biopsy slides from the pathologist in TX, they said they wanted the actual tissue that was taken during the biopsy so they could make their own slides. They wanted to run additional tests which required that they have the tissue block. Sounded gross to me. My tumor was sent from Texas to Minnesota via overnight express. I guess the pathology departments keep your old tumors for years and years sealed in a wax of some sort. Ick!!! But, I can see why. Better they get the tissue in the mail than having to come after me with a knife again!!

During our discussions and reading, we learned about the staging of this disease. Stage I & II patients have no HD below the diaphragm. The cancer is somewhat localized so that it is possible to treat these patients with radiation only - no chemo. Once the HD goes below the diaphragm, you are either a Stage III or IV. In these stages the cancer is not localized and a more comprehensive treatment must be used - chemo. It treats the nooks and crannies in the body. Radiation only treats the areas that are radiated.

Although we did not have all of the information yet, when prompted, Dr. P. said he had the feeling from what we did know that I was probably just a Stage II and that we would probably just have to do radiation therapy. Chemo is much more aggressive. The side effects are harder to deal with. I felt relieved. He arranged for me to meet with a radiotherapist / x-ray oncologist Friday.

I was feeling very good at this point. I had a great team assembled. Mike and Mom were with me. Dad was lending support and advise, holding down the fort and taking numerous phone calls at home. Kristen (my sister) is a research-aholic and kept feeding us excellent information. Ken (my brother) and his wife Jen sent me a package of goodies for the mind, body, and spirit. Things that helped keep me "grounded" during such a strange time. Jen, a research-veteran, checked out some insurance and legal stuff that proved to be very useful. Dr. P. headed up the medical part of the team. I believed in him from the get-go!

Thursday, June 26 - Bone Marrow Biopsy Day
It only took about 20 minutes. The nurse who did it does them all day long. She has experience. I like that. Mike came in with me. The nurse told him that he could come in. But, if he fell on the floor, he was on his own. She had to take care of me, not him. They offered drugs (Valium) but I declined. I didn't want to be groggy all day. I laid on my stomach. She numbed up two spots on the back of hips and went to town. She made the incision, numbed the bone, then used the biopsy needle to get into the bone. I felt a lot of pressure. It was gross. But, so far it didn't really hurt. She gave the warning that I would "feel it all the way down to the tips of your toes." Yuck. She was right. It was awful for about 20-30 seconds while she drew the marrow. I utilized deep breathing techniques I had learned in yoga. It helped very much to concentrate on the breathing rather than the pain in my buttÉwell, lower back actually. I squeezed Mike's hands pretty good too. Then she did the second side.

When we came out to meet my mom in the waiting room, she said she could not tell which of the two of us had had the biopsy. We both looked white. All three of us stood by the elevator to leave. After a couple of minutes of waiting, I realized that no one had pushed the button! So, I did. Later, Mike said it looked like veterinary medicine. I could see from his face that he was impressed with how I handled it. Yeah, it hurt for a short time. But, it was over. And I had survived. I wanted to have it done. I wanted to know if there was HD in my bone marrow! I'm glad he was there to watch and to be with me. It helped having him there. And, he appreciated exactly what I went through more because he saw if first hand.

We spent the rest of the day walking around town shopping. The biopsy sites were a little sore. Other than that, I felt fine. The nurse said walking would prevent stiffness. It felt better to keep moving. We went and had a big breakfast. I slept on my side and stomach that night.

Thursday, June 26 - Dr. Hell

This was a tough day. We thought we'd meet with the radiologist, go over the treatment plan, and be officially done with the diagnosis - ready to get started with the treatment Monday.

However (!!!), this is what happened. We waited and waited for the radiologist. Finally, his resident showed up. He looked me over and we discussed what had happened so far. He was sent in to discuss the complications associated with radiation therapy. He sounded like a text book. He must not have had his "Bed Side Manner" course yet. I stopped him when he said my chances for breast cancer would be higher and that I would need to have a mastectomy because my body will have already seen to much radiation during treatment for the HD. Although it was true, all I could think of was "What the hell are we talking about a mastectomy for?! Let's get rid of this cancer first." I asked him kindly, "when will the doctor be available to talk with me?" I was getting mad because he hadn't told me any of the most recent test results - especially my bone marrow biopsy. We wrapped things up and he left. We were still on good terms - sort of.

Dr. Hell, the radiologist we had been waiting for, came in. He breezed in and out in about 15 minutes. When he arrived, he proudly announced that he had "already spent about 15 minutes reviewing your case." Big deal, doc. He tried to push a clinical study on me (which he wouldn't clearly explain). His alarm on his watch went off. He said he had to go and we could talk with someone else next week if we had more questions. He was going to be on vacation.

Since Dr. P. is overseeing all of my treatment, we were scheduled to meet with him to go over the outstanding issues. He asked me how the bone marrow biopsy went (he cared J). He said it came up negative - no HD in the bone marrow. He said that the radiologist who reviewed the CAT scans saw something funny on my liver. They scheduled an ultrasound for next week to take a closer look. It was probably just a cyst. Other than that, it did not appear that there was any HD below the abdomen. Still no final word from the Mayo pathologist to confirm my diagnosis. We discussed the meeting with Dr. Hell. I told him nicely that "I have never had cancer before" and needed a new radiologist who would be patient with my questions. He understood immediately and scheduled an appointment with radiologist #2 for Monday.

It was a bad way to end a pretty decent week. We were bummed, stressed, and just plain beat. We were getting a late start and had a long drive ahead of us. We had two cars between the three of us. I navigated (which is no easy task since there are no good east-west roads in Wisconsin). Mike and Mom drove. We all kept a close eye out for deer in the road once it got dark. It took us about 8 hours to get to my parent's house that night. (The trip normally takes about 6 hours.)

We spent the weekend recovering from the week. We unpacked what we were able to bring. We slept and relaxed.

Monday, June 30
Mike headed back to Texas (he flew) and Mom and I back to Mayo. Mike had to get some things in order (like put the house up for sale), then head to Colorado for his airline physical. The drive to Mayo only took 6 hours this time. We met with radiologist #2. Big improvement. We liked him immediately. He said that the Mayo pathology report agrees with the path report from Texas. We were relieved (again). But, only momentarily.

He threw another wrench into the program. He recommend that I have surgery - a staging laparotomy. He said that 20-30% of Stage II patients are Stage III and they just don't know it yet - the cancer is too small to be visible on the CAT scans. The only way to know for sure if the abdomen is affected, is to biopsy several sites in the abdomen during a laparotomy. If it comes up negative, my treatment plan will be 4-5 weeks of radiation to the upper chest and neck only. If is comes up positive, I'd be reclassified as a Stage III and we'd have to do chemo instead. If I decided against the surgery, my treatment plan would consist of 4-5 weeks of rad. to the upper chest and neck, a 3 week break, then radiation to the abdomen for another 4-5 weeks (as a safety measure since we wouldn't know for sure if there was cancer present in the abdomen or not). The decision was mine - and Mom's to make. They would not make any recommendations beyond what I have noted above. We were overwhelmed. They suggested we learn more about the procedure by meeting the next day with the surgeon-oncologist who would do the surgery.

We went back to the hotel. We didn't have any research material. We didn't have a lap top so we couldn't access the internet. My mom had a big pile of stuff she had brought to read during our down times. Kristen (my sister) had sent some information from the National Cancer Institute. As we read, we found information regarding the staging laparatomy. Perfect timing. Exactly what we needed. We both felt better. Way to go, Kristen!

I remembered I had another resource I could check. A friend of a friend works at John's Hopkins in research for a doc who treats Hodgkin's patients. She had offered her help a few weeks earlier. I called Julie. She got me in touch with her friend. I filled her in on what we knew to date. My question to her was "should I have the staging laparotomy or not?" She'd get back to me tomorrow.

Tuesday, July 1
We met with Dr. D. the surgeon-oncologist. We both liked him and his resident. They were patient and thorough with our questions. They explained that they would have to remove the spleen during surgery. The only way to know if it is affected is to take it out. They would also biopsy several lymph nodes and the liver. They jokingly referred to it as "the blue plate special" since they planned to take so many tissue samples. The incision would be about 6 inches long. Surgery would take 1-2 hours. I'd be in the hospital for 6-7 days.

I noticed a funny thing when talking to this doc. I probably noticed this because of my previous work experience. I used to work with orthopaedic surgeons. I'm an engineer who has also worked in marketing. I used to design and market orthopaedic implants and instruments. Anyway, he had perfect hands. They looked manicured and soft. Like he had never picked up a shovel or hammer in his life. From this I decided that he must have a gentle touch. It made me feel like I could trust him with a knife on me. I trusted that he would do as little damage to me as possible during the surgery. I felt good.

Next stop - ultrasound. We needed to determine if the spot they saw on the liver was a cyst or not. The ultrasound itself was pretty uneventful - which is good. They squirted jelly on my stomach and rubbed the scanner all over to examine my organs. They measured the size of the spot on my liver. It was about 2 cm.

Last stop - Radiologist #2. He called the radiologist who interprets the ultrasound for my results. We learned that the spot on the liver appeared solid. It was not a cyst. It needed a closer look. I was bummed. Each time we thought we were on top of things, something new would come into the picture. I reminded myself that the worst case was still going to be OK. It would be no worse than what I was expecting before I got to Mayo - 6-8 months of chemo. Still a very good prognosis. They scheduled the liver needle biopsy for the next day.

My mom had been very strong but was now very bummed. This was all getting to her. Each day added more complexity and decision. We were both in overload. We talked about it. I could hear her stomach growling from across the room. I felt like I was running her health into the ground. She said she was fine. I didn't believe her. End of story. Life's rough sometimes. But, you honker down and deal with it. We went out for dinner and had a margarita - probably not the best way to prepare for a liver biopsy.

We went back to the hotel. I checked with my John's Hopkins friend. She confirmed that the doc she works with said there was probably a 20-30% chance I was a Stage III and just didn't know it yet. He recommended that I "Definitely have the surgery. She is too young to not know for sure what she is dealing with." That was enough for me. Both Mayo and John's Hopkins recommended the surgery. What better advise could I hope for? I felt very comfortable with the decision.

Wednesday, July 2 - Liver Biopsy Day
No eating again today. Love that "Mayo Diet." I wasn't so chipper. I felt neutral. Not up, not down - maybe numb is the way I felt. I knew I was ready for the diagnosing to be over. I wanted to get on with the treatment. Oh well. We went to the hospital. I changed. We waited and waited. The more we waited, the more uneasy I became. The needle biopsy procedure hadn't yet been clearly explained to me. I didn't know what to expect. I got up and asked the nurse at the desk a few questions to relieve my anxiety. It helped. A few minutes later, they called my name. They explained everything to me in detail. I would be awake. They did an I.V. just in case something went wrong and they needed to get meds in me quick. They offered a short term "joy juice" to make me relax. I declined. Didn't want to feel "relaxed" all day. They numbed the skin, then the deep tissue. I changed my mind - Bring on the "joy juice!" The doc inserted a "gun" that took a thin slice of the liver. This whole procedure was done with the assistance of ultrasound so they could visualize the spot in "real time." They had to go in three different times to make sure they had enough tissue for examination.

Once again, it wasn't great. But, it was OK. I really didn't feel any pain. It just felt weird. They were digging around in my liver! It took about 30 minutes to complete the procedure. I had a little cramping in my upper chest. They said it was due to bleeding of the liver. It stopped in about half an hour. They said it was normal. I felt fine the rest of the day.

I felt a lot more positive once the procedure was behind me. I finally had some quiet time too. No appointments in the afternoon. Mom dropped me off at the hotel. She did some errands and had her hair cut. She was gone several hours. It gave me a chance to make some phone calls, watch some soaps, keep up with tracking expenses (gotta claim those tax deductions), and journal writing.

Thursday, July 3
We met with Dr. P. and radiologist #2 to wrap things up. The liver was clean. No cancer. Yeah! We told them we decided I should go ahead with the staging laparotomy. They scheduled it for the following Wednesday (July 9). They scheduled my first day of radiation for July 28. The time in between was for recovery from surgery. They sent me for immunization shots to protect my immune system since they planned to take the spleen during surgery. (My arms were sore for 3-4 days!!!!)

I felt great about the decision to have the surgery. I felt great knowing that I was still considered a Stage IIA even though I knew that could change after the surgery. In my heart, I wasn't that concerned that they'd find anything during surgery. I was pretty sure they wouldn't find anything. Mike refers to this cancer as a "speed bump" in our life. If they were to find cancer during surgery, then the speed bump would just be a little bigger. But, it would still just be a speed bump. We plan on getting over it and putting it behind us.

Mom and I drove home in the light. No deer patrol necessary. It took 6 hours. We felt great!

4th of July weekend
I love my sister. But, her family makes a lot of commotion. They arrived from out of town about half an hour after Mom and I got home. She and her husband have two beautiful kids. A three year old and a 7 month old. It was great to see all of them. But, it was very tiring. On top of that, my Dad's brother was in from out of town. He came over too. It was a busy weekend. I could have used more quiet time and rest. I made a decision, or rather a promise to myself. During my treatment and recovery, if I am tired or need quiet time, I am going to remove my self from the commotion and take the time I need to feel better. I need to do that to get better. That's my job right now.

Mike came back from Texas for my surgery. I missed him. I was very glad to have him back here. Also, Mom would get a much needed break from going back to Mayo. She had been gone from home for the past 4 weeks in a row. That's a lot.

Monday-Tuesday, July 7-8
Back to Mayo - with Mike this time. We had a pre-op appointment with the surgeon - oncologist's resident. He was very informative and helpful.

Wednesday, July 9 - Staging Laparotomy
We went to the hospital at 9:00 am. They brought me to my room. A third summer nursing student took my complete medical history and went over what Mike and I could expect during the next few days. She was great. I think she was an angel. It was like having one of my close girlfriends with me. I was well informed and well taken care of. We also had some good laughs. Her name is Shane.

Surgery called for me before the I.V. Team was able to stop by and do my I.V.s. This was unfortunate for me. I know anesthesia can put in I.V.s. But, when there is an I.V. Team at a hospital, I think it is safe to say that anesthesia doesn't do as many as the I.V. Team. I had one in each hand. They bugged me the entire time I was in the hospital. They hurt!

Surgery went great. They kept Mike very informed. He was with me when they took me away to the O.R. They called him when they had finished prepping me and had started the procedure. They called him again when the procedure was done and I was sleeping in recovery. The doc said he didn't see any obvious signs of cancer. But, it would be a few days before pathology has the results. About 45 minutes later, they called Mike to let him know I was on my way back up to my room to join him. I think the procedure itself was about 1-2 hours. Including prep time and recovery, I think I was gone from my room for about 3-4 hours. When I saw Mike, I gave him a wink to let him know I was OK even though I had tubes everywhere. He gave me a smile back. My heart was warm!!

I was groggy for the rest of the day, of course. I had morphine (for the pain) at my fingertips. Just push the button and I get some more (within reason, of course). I felt fine J. They brought in a cot for Mike to sleep on that night. I was glad they let him stay. Poor guy. The nurses came in every hour to check on me. With all the medication in my system, I'd go right back to sleep when they left. He had a long night.

Thursday, July 8
They removed my catheter first thing in the morning. I couldn't believe when they came in my room shortly after that and wanted me to stand up so they could weigh me. But, they needed to know - for some reason. With a bunch of help, I stood up. I had gained 8 pounds since yesterday and had eaten nothing!! It was all that fluid they said.

They encouraged me to walk that morning. I was so nauseated by the time I got to my door, that I had to turn around and go back in bed. The only walking I did the rest of that day was to and from the bathroom. That was more exercise than it sounds like. I was drinking liquids plus they had my I.V. dripping like crazy. I had to go to the bathroom every 15-20 minutes for a while. Finally, they slowed it down and I got some relief.

Friday, July 11
I got to take a shower - even if I did have to sit on that funny chair in the tub. I walked the halls a lot. Mike and I went outside on a balcony for some fresh air. I ate soft foods and drank liquids. We watched movies in my room. The hospital library had VCRs and movies for the patients. I still needed help sitting up. But, I made good progress every day.

When my doc came in for rounds, he let me know that the pathology report was in. All tissue from "the blue plate special" was negative for Hodgkin's Disease. We expected this news from what they had told us so far. But, it was great to hear. I was still a Stage IIA - just like they told me 29 days ago in Texas. But, now I knew without a doubt how advanced the cancer was. Knowing that it is not in the abdomen will eliminate the need for chemo or at least radiation in that area. My treatment plan will consist of just 4-5 weeks of radiation to the upper chest and neck area. EXCELLENT!!!

Part of my left foot was numb - like it was asleep. I asked my doc about this. He said it was unrelated to the surgery. I told him that did not make sense since it was not like that before the surgery. He couldn't explain it. That made me a little mad. Later that day, one of the nurses said that it can take two weeks for damaged nerves to repair themselves after surgery. I hoped that would be the case with my foot.

Saturday, July 12 - Leaving the Hospital
They told me that I'd be in the hospital for 6-7 days. By 7:00 am, my doc had signed my dismissal papers and I was free to go. I was only there for 2_ days. I must have been doing really well. Or, maybe they were tired of me. Who knows? Mike came to get me after I had showered, eaten, and packed. We went back to the hotel and camped out there for the day. He had to help me sit up. I was on Darvocet for the pain. I was happy with my progress.

Sunday, July 13 - Back to Michigan
Pillows and pain pills made the 6 hour trip not so bad. It was good to be back home again.

Monday, July 21 - Today
About 3 days ago, I turned a corner and have felt pretty good since. Although my recovery in the hospital seemed to progress rapidly, things slowed down once I got home. I really had to concentrate on listening to my body. I had to remind my self not to over do it. I was tired. But, sleeping was tough for several nights. I was trying to get off the pain pills because they are - well - they are constipating! The docs said that with any abdominal surgery, the intestines get "shocked" and "go to sleep" for a while. Once in a while my intestines get "sleepy" on their own. I didn't want to deal with that any more than I absolutely needed. Mom's friend, Joanne suggested 5-6 orange flavored dried prunes per day. She was right. My intestines woke up!

My left foot seems like it is waking up. It's still a little numb. Noticing the improvement makes me feel like it will probably be back to normal soon.

For about 7-10 days after the surgery, every time I rolled to the side when lying down, I could feel and hear my insides shifting/sloshing. Ick! I guess since they were messing around in there, things weren't anchored down like they normally would be. Gradually, that feeling decreased and then stopped.

Also, regarding the abdomen, especially at night, sometimes I could not tell if I was in pain, hungry, had gas, or was constipated. Or, all of the above. It was strange not being able to identify what I felt so that I could resolve the situation. It just took time for everything in the abdomen to return to normal. I should have been more patient.

©1997 Diana L.E.G. Hinnrichs