51 Days to a Diagnosis...or On Being a Pincushion

One of the things that is so difficult about any major illness, including cancer, is the length of time it can take to get a final diagnosis, the many procedures you may go through, and what seems like random guessing from medical professionals until all your test results come back. In my case, it was 51 days from the time I was told that I had a mass in my abdomen until I was given a final diagnosis of Stage IV Diffuse Large B-Cell Non-Hodgkin's Lymphoma.

1. April 1st - After X-ray at my doctor's office showed what may have been a blockage in my intestines, I was sent for CT scan at another location (icky crap to drink, zinger in my arm when they put the contrast in). Outcome: I was told there was a mass in my abdomen, that they suspected metastatic breast cancer, and that they may have to perform emergency surgery. It's hard to explain how it feels to be told you have metastatic cancer...


2. April 3 - While at the grocery, I got a call from the oncologist who treated me during my bout with breast cancer and learned how large the mass was (11 cm x 8 cm), discussed my BM's in the middle of the Natural Foods section (quietly, so as not to frighten the other shoppers), determined I didn't need surgery immediately but would meet with surgeon the following Monday. He thought it highly unusual to have breast cancer metastasis show up in my abdomen.


3. April 6 - Met with the surgeon who showed me my CT scan (interesting to see your innards). He thought it was not metastasis but most likely a Gastrointestinal Stromal Tumor or possibly lymphoma. He let me know that I was, in fact, "full of crap" at the time the CT scan was done because the mass appeared to be involved with my small intestines but was also pressing on my other organs, especially colon.


4. April 16 - CT-scan guided core needle biopsy - yes, it took 10 days to even get an appointment, good grief. I had to be awake in order to follow directions (holding my breath, etc.), so I was given both pain medication and a sedative. That didn't help much when they really got down to taking little nips of the mass - chu-chunk (this is the sound the seemingly spring-loaded needle makes when it goes in for a nip, of which they took three or so). Outcome - results didn't come back for several days and were inconclusive although they suggested a lymphatic process; oncologist wanted laparoscopic surgery to get larger sample.


5. April 27 - Had a meeting with the surgeon and he advised that instead he wanted to remove the whole mass with open surgery because the mass was involved with the small intestine, of which they would need to remove about 2 feet. Many cases of lymphoma don't require surgery but mine did because, if I had chemo first to reduce the size or eliminate the mass, it was likely that I would end up with a perforation of the intestinal wall...not good. He also let me know I would have a lovely vertical scar right up the middle of my abdomen. Sigh...no more bikinis. Surgery was scheduled for Thursday, April 30. More bloodwork for pre-admission.


6. April 28 - Ended up in the emergency room a little after midnight (technically, the 29th). I had held out for a long time with a mass that was already causing me pain, and I started having severe pains in my abdomen that wouldn't go away. Was in most of the night but they didn't admit me because they still didn't think that it was an obstruction.


7. April 30 - Surgery! Was in surgery by 7:30 AM and was finally in my room by about noon (I think). Generally speaking, I did well except the first night at about 1:00 AM when they decided my blood pressure was low and took me off the epidural pain medication I was receiving. They told me that I just had to use the pump, which I was supposed to push every 10 minutes. I thought, seriously, you don't really expect me stay up all night pumping my own pain meds after major abdominal surgery! Then the pump wasn't working and I had pain like a charley horse in all my abdominal muscles. I am no whiner, but it was awful. Thank goodness my friend Renee spent the night at the hospital with me and made sure I got the attention I needed. I don't know what I would have done without her. My mom stayed the next night and I was fine on my own after that. My brother had also come back with his girlfriend and so they helped out on the home front.
   
   I ended up being in the hospital for 8 days...so tiring. They continued to not let me sleep...ever! As they say, hospitals are no place for sick people. On an amusing note, the sign that the doctors were waiting for to indicate my small intestine was healing was that, ahem, I passed gas. They kept inquiring about it and one of the nurses asked me if "the condor had landed."
   
   The Surgeon came in the second day and told me he thought that, in fact, it was metastatic disease because he had never seen anything like it. A few days later, after some of the lab work had been done, he re-advised that they thought that it was lymphoma, although they were working on confirming the specific sub-type.
   
   So, over the course of 51 days, I went through thinking I had...metastatic breast cancer...gastrointestinal stromal tumor...lymphoma...metastatic breast cancer....lymphoma...
   
   While in the hospital, I did get some lovely gifts and visits from friends, in addition to my family being there for me...that really helped.
   


8. May 12 - I had an appointment with the oncologist for a bone marrow biopsy and lumbar puncture (spinal tap). Confirmed it was Diffuse Large B-Cell variety but, since I didn't have any other symptoms, he felt that it was likely Stage 1, which was good news. Bone marrow biopsy - ouch! No fun to have someone core into the bone in your pelvis and suck out some marrow (that hurts the most but, luckily, only for a few seconds). Having the spinal tap was comparatively a breeze, but I ended up having an excruciating multi-day "positional" headache (fine when I was lying down but excruciating when I sat up) and ended up in the emergency room again on May 15. I felt really bad for my mom who was up late again with me and then had to fly back to Phoenix on an early flight the next day. Also told that I would definitely need chemo, but possibly less than 6 rounds since it was Stage 1 and would have a dose-dense regimen every two weeks, so I would be finished by July. Leaving me a little hope that I could still start my Ph.D. program.


9. May 19 - Had a PET (positron emission tomography) scan that can detect other areas where there may be cancer. You have to be injected with a radioactive tracer and then put into a machine similar to a CT scan. Never a good thing to see someone inject you with something that they bring in a heavy metal container and when all but the business end of the shot is also encased in metal to protect the technician...hmmm...


10. May 20 - Had a MuGA (Multi-Gated Acquisition) scan on my heart. This checks if your heart is pumping well since one of the chemo drugs I will have has a small chance of causing heart damage (nice!). This involves having your blood drawn, a radioactive marker introduced into your blood (I'm glowing at this point!), and then the blood is reinjected. Then you put under a small machine to image your heart pumping (gamma camera...I got that from Wikipedia.


11. May 21 - Had visit with new oncologist to discuss results. Unfortunately, the PET scan showed that there were other lymph nodes, albeit fairly small, that were still affected. I asked about the staging and the oncologist advised it was Stage IV and that I would need 6 rounds of chemo at a minimum and possibly as many as 8. And the treatments would be 3 weeks apart rather than the dose-dense every two weeks...I'll have chemo until at least mid-September and maybe into October. So, I'll have to defer the Ph.D. program...I know my health is most important but it still sucks to have your life plans turned upside down.

So, there is my long tale on just getting a final diagnosis. For anyone who is supporting someone with cancer (or for health professionals), it's really helpful to be cognizant of how much someone has gone through just to get diagnosed. Sometimes it's quick...but often not.

Coming up...PICC line installation...