This is a lot of background I know, so scan through it if you're interested. I am posting it for myself, and my family and friends that have had questions about the initial symptoms and events of the past few months. It's half factual, and half emotional journal entry- hope you don't mind!
8/21/10 Sat.: I had a big headache- not quite a migraine, but not a tension headache either- and felt tired and grumpy all day. I noticed it was abnormal, but some days are just rough right?
8/22-9/12: Headaches nearly every day. Body aches, tiredness, grumpiness (and it wasn't just my kids!), low fever often accompanied. Evenings were terrible for achiness and low fever. I also had some tingling in my left fingers, along will a dull ache under left armpit. By now I was keeping track of the headaches (in a notebook) because they were so strong and so much out of the ordinary for me.
9/7-14: Somewhere in this week I changed my diet a little bit. I stopped taking the energy pills I had been taking, stopped drinking so much diet soda, and generally started eating better (and continued to exercise at the gym). The headaches improved drastically, but now I noticed a pain in my chest on the left side. It was different than I remembered the pain being when I was 16 with Hodgkin's, but it still freaked me out. I would wake up from the pain in my chest and have to get up or roll to my stomach to ease the pain. It was so weird- almost like needing to burp but painful, or like the pain when you swallow a chip, but backwards... Like I said, weird! Pain under left arm was pretty much constant, and for about a week there was a pain on the outside of my chest, above the left breast, but no lumps.
9/15: I slept horribly. Had pain in my left chest so I couldn't sleep on that side. Finally, I decided to give my body a once-over to see if there might be any lumps. I truly thought that I did not expect to find anything, but then I left my neck to be the last place I'd check. If that's where the previous lump at 16 had been, why did I save it until the end, if I didn't suspect? I think I was lying to myself. Of course I found a small lump in the left supraclavicular lymph nodes- cool word huh? Very hard to say in every day speech! It's probably needless to say, but I felt like crying all day.
9/16-20: I tried to will the lump away! I kept thinking it was from the kid's cold that I had caught, and the chest pain was just some random trick of the body.
9/20 Mon.: When I tried to make an appointment with a doctor, the earliest date they could give me was Oct. 8. At first, I took that date, but as the day dragged on, I decided I couldn't/shouldn't wait any longer. So I called a local doctor with good reviews (even though he was located in Passaic) and they said I could come in that day! I dropped the kids off with Melissa Avery, and took off. Dr. Soliman was extremely nice- even if he talked about the three things you're never supposed to talk about when meeting someone for the first time (politics, sex, and religion). He was kind enough to admit I needed someone with more training, and referred me to an oncologist for Friday. Dr. Soliman spoke personally with the oncologist and performed the blood work the doc suggested.
I had not told Adam about my suspicions of cancer until this day- he was the first to know for a while, and he seemed quite shocked, as you can imagine. I kept my true suspicions from others for awhile longer, because I really wanted to keep from worrying anyone prematurely. Especially Adam who was very busy with his job, and my mom, who was planning a trip to come see me and not feeling great herself, and everybody else who, as we all do, have worries and stresses that don't need to be compounded with not knowing what, if anything, was wrong.
9/23 Wed.: At my request, Dr. Soliman performed a chest x-ray and sent the results to the oncologist. I looked at the x-ray and my untrained eye saw nothing out of the ordinary. The lump in my neck did not show up that I could see. Adam and I talked about how horrible the waiting was... If we'd only known how long the waiting would (could still?) be!
9/25 Fri.: Went to see Dr. Zaman the oncologist- he only worked weekend nights- odd huh? The wait was over an hour, the nurses were curt and treated me as though I was "faking it." I was asked multiple times if I had a diagnosis or results from any testing, then given nasty looks when I said that I had nothing! Just a tiny lump! Dr. Zaman himself was nice and very professional. Of course, results from blood labs and the x-ray at Dr. Soliman's had not made it to the office. After a short exam Dr. Zaman said he didn't think it was anything serious, but that we had to check it out and I should have the nurse get me an appointment for a PET/CT scan and a Muga Scan (heart) for the following week. The nurse was to get my scans approved by my insurance, and schedule them for early in the week so I could see the doc the next Friday. Blood was taken again.
9/27-10/01 Mon.-Fri.: Dr. Zaman's nurse gave me the runaround. I have rarely been so frustrated! She was curt with me when I called, told me she would call me, then wouldn't call! And when asked the next work day why she didn't call me back, she acted short again and blamed it on the insurance. So again, she would call me. After no phone call all day, I tried calling her... the voicemail was turned on! An hour before closing! When I tried the next day, the receptionist told me she had the day off, and I needed to reschedule my appointment with Dr. Zaman because I had not had my scans yet. Can you imagine my anger? Turns out, the insurance needed just a little more info from her (I called my insurance to see what was going on). When I asked the receptionist if she could just take care of it she kept repeating, "Jill will be back tomorrow morning at 10."
10/04 Mon.: After calling my nemesis Jill several times and dealing with her barely concealed impatience, she finally had an appointment for me to get a Muga and PET/CT scan the next day.
10/05 Tues.: This was the day I knew for sure the cancer was back. After being injected with the radioactive contrast, and drinking two giant bottles of slimy grape-flavored white goo, and almost an hour of lying still listening to Dr. Laura while I was irradiated, I requested to see the PET scan. Having done a little research beforehand (and having had something similar done at age 16) I knew to look for the bright spots that meant cancer. At first, the technician told me the large bright mass near my heart was just the heart muscles picking up the contrast. Then, I saw the node in my neck shining brightly. My exact words, "Dangit, it's cancer again. This sucks!" I went home and told Adam, but I had decided to wait until I knew more from Dr. Zaman on Friday night to tell anyone else.
10/07 Thurs.: I made it two days without telling anyone else! My mom was visiting and we were talking about all of these tests. Sophie called me and asked some very pointed questions. Mom was listening to my end, and I could see her face tightening. When I got off the phone, she asked if I thought it could be cancer again- so I had to tell her I found a lump and had seen the scan. We both cried for awhile- I needed a good self-pity-party right then.
10/08 Fri.: After a 2 hour wait at Dr. Zaman's office, I was given the results of the scans. The doc was starting to wind up for an intro when I said I'd already seen the scan- you can't imagine how his face changed! He seemed so happy that he didn't have to break the news to me, though he remained professional. The heart scan was normal, but the PET Scan showed extensive tumors in the chest, neck, and in the "dome of the spleen." The largest tumors measure up to 4 centimeters by 3 centimeters, and it appears that there are a lot! The doc was surprised that I didn't have more pain or more outward appearance of tumors. He could only feel the one in the neck, though the entire area was swollen. He suggested I transfer to Hackensack University Medical Center (HUMC) to Dr. Goy, and he proceeded to expound on what a talented and wonderful doctor I'd be getting. I asked what percentage he was sure it was Hodgkin's Lymphoma again and he said over 98% sure.
I went home and told Adam and my mom. Afterward, we called close family to tell them the news. On Sunday I told several friends at church and asked for a Visiting Teacher, since I didn't have one yet.
10/14 Thur.: Chopped off my hair! But that's another post...
10/18 Mon.: Met with Dr. Goy for the first time. The reason it took so long to get an appointment with him... My least favorite nurse, Jill, gave me the exact runaround as she had previously! I was given a very quick exam and told Dr. Goy had to see the PET/CT scan and needed to have it sent over before I could have an appointment for the biopsy. I willingly suggested I'd go pick them up and bring them over, just to move things along! It worked well, I was able to get an appointment for the next day with Dr. Inouye.
10/19 Tues.: Met with Dr. Inouye and scheduled my biopsy for the the next Tuesday.
The rest of my appointments and drama will be documented as we go. I took pictures of the neck and bone marrow biopsies and will get those entries made soon. I will continue to take pics so I can keep everyone updated. If you read all of the above- thank you, and I hope you weren't working and wasting your employer's time! If you didn't read all of it, who could blame you?? It's way too long!