The Waiting Game

I wish I could find a calendar that I could copy and annotate. I want to record all of the waiting time that's associated with just this occurrence of cancer.

* About the middle of April, I feel a small bump in the right crease of my leg, at the very top. Drat!

* Dale and I wait until Thursday, April 19, to visit my primary care physician to see what they think of it. I don't want to tell Dr. Wendy tomorrow that I felt a lump but didn't do anything about it. That wouldn't be wise given my history. The PA on call doesn't think it has anything to do with lymph nodes or cancer. It feels harder than that. I'm told just to watch the area and maybe get an xray of the area if it doesn't resolve soon.

* Friday, April 20, I meet for a regular follow up with Dr. Wendy. She can't really feel anything, so I'm told once again to watch the area.

End of April, the bump actually seems to subside and eventually go away. Whew! Maybe it was just a swollen lymph node from an infection my body was fighting. (Or a preview of what's to come?) No one knows.

* Wednesday, May 23, and time for a standard follow-up appointment with Dr. Wendy. No bump this time. I'm due for routine scans before my next appointment. I'll just wait and see what the scans pull up next month because I think I can feel the bump again. However, it's much harder than any other cancerous lymph node that I've ever felt.

* Monday, June 11, Dale starts a new job and we'll have new health insurance starting July 1. It doesn't make sense to pay for a CT scan now when new insurance will start in a few short weeks, so I postpone the CT scan.

* Wednesday, June 20, another follow up appointment with Dr. Wendy. No scans to consult, but the bump is definitely there. We'll wait for the new insurance and then schedule the scan.

We make sure to sign up for health insurance coverage through Dale's employer about five days before it's due so that we're sure we'll have coverage starting on July 1st and can schedule a CT scan.

* July 1-13, no news from Dale's employer or health insurance. After several calls to both places, we're told that Anthem Blue Cross Blue Shield (BC/BS) accepts new enrollment information only during the third week of each month, so we'll have to wait until the week of July 15 until they start processing our information. Dr. Wendy's office makes several calls to BC/BS, but we're not in the system yet. And they won't give the pre-approval for the CT scan until we're in the system. Wait, wait, wait!

* Week of July 15. The insurance information should go through this week. After several calls, they FINALLY have ID numbers for us about Thursday, July 19. Now, we can start getting a CT scan authorized and scheduled.

It's been about three months since I first felt that lump that eventually went away and then came back!

* Friday, July 27, the CT is finally scheduled and performed at the Central Utah Clinic in American Fork. Now wait the weekend until the results are in.

* Tuesday, July 31, appointment with Dr. Wendy--the one where she asks if I've been pouring fertilizer into my lymph nodes. She actually had the results Friday afternoon but didn't want to ruin my weekend, so she just waited. What's the next step? What do we need to wait for now? For BC/BS to give pre-authorization for a PET scan.

Drat! Dale didn't come with me to this appointment. Suddenly, I'm wishing he had. So I cry to Jackie and Cindy. I actually lie or deliberately try to put off answering his question of how my appointment with Dr. Wendy went because I'm not going to tell my husband over the phone that I probably have cancer yet again!

* Thursday, August 2. It's been 2 full days since I saw Dr. Wendy and no PET authorization yet, so I call BC/BS to see what the expected wait time is for a PET authorization. Their answer? 5 extremely long days, unless Dr. Wendy originally made an urgent request, then the wait is only 2 days!

I can't do this anymore. The waiting is killing me. I hoped the CT scan would come back and show some sort of bone protrusion, not a swollen lymph node. Drat!

I call Dr. Wendy's office--forgetting that she and her staff are out on Thursdays. I am eventually transferred to a medical coordinator for a different oncologist in the office. After patiently listening to my partial melt-down from all of the waiting, she agrees to call the insurance and see what she can do.

* Sunday, August 5. I ask almost the whole ward and all family members to join with Dale and I in fasting for me. How many times can one person beat Hodgkins? I fear that I'm fast approaching that limit.

* Monday, August 6. It's been almost an entire week since I saw Dr. Wendy and a PET is still not authorized or scheduled as far as I know. After calling Dr. Wendy's office again, I'm finally told that we have the authorization. Now we're waiting for the Huntsman Cancer Hospital to schedule the PET. They're notoriously slower with scheduling because they don't trust the initial authorization that the insurance gives the doctor's offices, so they have to call the insurance company themselves to verify the information personally. Tearfully, I ask if we can make sure that we get an appointment--any appointment, for any time of day--SOMETIME before this week is out.

AAARRRRGGGHHH! The What If game is really wreaking havoc on me now, and it's difficult to sleep.

* Tuesday, August 7. The PET is scheduled for 7 a.m. Friday morning. At last!

* Friday, August 10. PET scan is done, but no hints if any areas lit up. More waiting. I try to work, but end up leaving two hours later. Huntsman said that Dr. Wendy would have the results today, so I'm going to try and get those results before the weekend comes and I have to endure more waiting.

Drat! No such luck. I feel like I'm having a partial nervous breakdown in Dr. Wendy's office while crying to Kathy that the waiting gets harder and harder with each occurrence. Somehow, you would think I'd get more seasoned and patient with the process, but I find the opposite is true. I have a good idea of what's coming, and I just want to get to the known facts. Stop the waiting game, please!

It isn't a fun weekend. In fact, I cried into Dale's arms one night. Please, stop the torture and just tell me what we're dealing with this time and what we're going to do about it. Please!

* Monday, August 13. I'm at work. April's on the phone, telling me that Dr. Wendy wants to talk to me. FINALLY! Except the news isn't what I'm hoping for. She rattles off so many areas that show active disease (lit up or have cancer) that I can't record them all. She's going to talk with Dr. Asch at LDS Hospital about any other ideas their team might have for me and call me Wednesday. Her plan is to start chemo either Friday or Monday. More waiting.

* Wednesday, August 15. Dr. Wendy's office calls to say that Dr. Asch presented my case at the Tumor Review Board meeting this morning, and I should expect to hear from someone at LDS sometime later today.

Except there's a problem. I have training scheduled from 1-3:30, and I'm the designated note taker for a very complicated process. At least three other people are relying on my notes. Then, I have a meeting from 3:30-4:30 that I'm responsible for leading. I've already postponed that meeting once from Monday (because it was supposed to happen right after I heard Dr. Wendy's long list of areas that lit up), so I'm not postponing it again.

My schedule gives me about thirty minutes to talk to someone right now, so I call the bone marrow transplant team. Rachel (the coordinator who's guided me through all the phases of collecting the stem cells and the transplant and talked with me so much that I feel our relationship is more like personal friends than professionals) is talking to me, explaining that Dr. Asch wants to meet with me to discuss the possibilities of an allogeneic (cells from a matching donor) transplant. However, she can't meet with me until Monday  (August 20) afternoon, so there's going to be no chemo or treatment until after I see her. It's my choice whether I meet with her or not. I don't want another transplant at this point in time, but I do trust her opinion and gathering more information can't hurt, so I reluctantly agree to wait longer so that Dale and I can talk with her on Monday.

Wait, wait, wait.

I don't want to wait, and I really don't want to hear about the possibilities of another, more intense and more difficult transplant, but I wait--yet again.
It's now been four months since I first felt that initial lump. Oh, help! Do you think I can start treatment sometime during this next week. Please?!!