Radiation Begins

After taking a few scans, making a foam mold of my lower half so I can lay in it and position my body in the exact same way every time, adding tiny black stickers to my body (because I beg not to be permanently tattooed), and a few follow up appointments with more scans, we're finally ready to begin radiation on Thursday, April 18.

Hooray! Initially, I was told that it would take at least 2-3 weeks before we began, but it's been only a week and we're starting. Hooray!

It will take 20 sessions, so I'm scheduled to finish on May 15.

Every day I drive to Provo, walk in the side door, wait in a separate back waiting room (where I never see anyone else) until one of the technicians comes for me, walk into the leaded radiation room, drop my pants (while they hold a small cloth in front of me for modesty), get positioned on the narrow table, wait for the 2-3 technicians to finalize all the tiny alignments with those stickers, watch the technicians leave and close the heavy leaded door behind them, wait approximately 11 seconds while the machine hums over me, count off another 30 seconds or so while the machine spins around my body so that it's now positioned under me, and count off a final 8 seconds for the last part of the radiation is delivered preciously where it needs to go.

Then it's a quick hop off the table, get fully dressed again, and I'm free to go again until it's time to repeat the process.

Tomorrow, same time, same place, every weekday until 20 treatments are finished.

It's not hard, difficult, or even that time consuming. The side effects are very minimal--just some redness that feels like a minor sunburn. I start applying Radiaguard (a lotion) about the fourth or fifth day, 2-3 times a day, and its works great.

It's the drive between Cedar Hills and Provo every weekday that quickly gets old. Oh well. If it prevents the Hodgkins from coming back, it's definitely worth it!

Setting Up a Radiology Appointment

Now that the Hodgkins is gone--again--I need radiation--again--to try and prevent those lymph nodes from getting cancer in the future. It's a way to try and stop the Hodgkins from returning (because it tries to return in the last spot it was in).

After lots of phone calls to check with Dr. Jay's IHC office, our insurance company (Blue Cross/Blue Shield), and Central Utah Clinic in Provo, I'm finally able to determine that I have to drive down to Provo for radiation, so I call to make that appointment.

It's a good thing that I'm used to standing up for myself because Dr. McAllister's receptionist tries to tell me it will be at least a week before he can see me.

I'm not willing to wait an entire week unless I absolutely have to.

What's the delay? He doesn't have a spare 30 minutes anywhere in his schedule within the next four working days?

Well, he likes to get and review all the information from previous scans, radiation treatments, and the referral from the oncologist before that first appointment. I can understand that, so what if I pick up all the information he needs and bring it to his office?

So I head to Salt Lake City and drive to the UofU hospital where the PET scan results from Huntsman are kept, find my summary statements from Mott's Children's Hospital at the UofMichigan from when I was 7, and stop by Dr. Jay's office for my radiation records from them.

Then I drive to Provo and hand deliver everything to Kathy.

I've been around the block a few times; I know how medical things work; and I know how to speed them up.

Amazingly, Dr. McAllister can now see me on Monday, April 15 at 1:00 pm.

Whew! It's like I have to beg for the treatments I know that I need.

Insurance Nightmares

I once heard that the CEO/President of Intermountain Healthcare (IHC) and the IHC insurance company and plan (SelectHealth/SelectMed) and the CEO/President of the University of Utah medical systems have a personal grudge or disagreement with each other.

Because of their disagreement, one (or both) of them vowed that they'd make sure that IHC and the UofU medical systems always remained separated from each other so that IHC providers would never be covered by insurance companies that accepted UofU providers and vice versa.

I certainly hope that is not the truth!

If it's only a squabble on a personal level between two (so-called) professionals that's keeping me from
* being seen by the radiologist that helped me before (That familiarity and history definitely helps when dealing with cancer!)
* driving only 1.5 miles from my house
* and requiring me to pass a radiation oncologist's office while driving the 30 minutes it takes to drive to south Provo to another office
then
I HOPE SOMEHOW JUSTICE IS SERVED AND THEY HAVE TO COMPENSATE EVERY PERSON THAT THEY INCONVENIENCED!

Please, please tell me that my health care decisions are not affected by disputes of a personal nature!

No Dr. Jay This Time

I decide to go into work on Monday morning, because I agreed to cover for my team. Cancer or not, I'm a person of my word.

While I'm at work, I'm trying to navigate how to set up radiation appointments.

So Corrine from Dr. Jay's office is back in the office and relays this unfortunate news: since we now have Blue Cross/Blue Shield insurance, Dr. Jay isn't a covered provider for them. He's only an IHC (SelectHealth/SelectMed) provider, so I need to contact the nearest radiation oncologist--in Provo!

I immediately put in a call to the Radiation Oncology department at Central Utah Clinic in Provo and leave a message.

About 11:00 am, I haven't heard back from Provo, so I call again. Finally I get through to the receptionist who tells me that the soonest that she can fit me in is Friday afternoon. Really? Are you kidding me? I know how scheduling goes and know that there is room in their schedule sometime before Friday.

The waiting game is the worst part for me. When you know you have a serious medical condition and you know what the next step is, why do you have to wait for it?

I decide I can't handle waiting, so I call the receptionist on her statement. "Really? There are no possible appointment times from Monday afternoon until Friday afternoon? With two doctors in the office? Are they on vacation? At a conference? Surely, we can take the next step without having to wait until Friday? I know how this goes. This will be my third time getting radiation and it's my fourth time dealing with Hodgkins lymphoma. Isn't there something we can do to move things along?"

She bristling a little, but then starts explaining that Dr. McAllister first needs a referral from Dr. Wendy. Then, he needs time to receive all of my records and time to review them, so Friday is probably the first chance he'll have to get everything he needs.

"It's okay; I understand what you're telling me. What can I do to speed up the process? I'll hang up now and make sure Dr. Wendy's office calls you immediately. What else? What records does Dr. McAllister need? I'll get them and hand deliver them to your office if it will help."

So finally acquiesces that if they get the referral call and if they get my medical records faxed over from Dr. Wendy, she can fit me in on Wednesday. Whew! One obstacle down.

Next, Next Step

Back to Dr. Wendy's office to find out the results of the recent PET scan.

I wonder what we'll find out, but I have absolutely no inspiration or feelings as to the results. It would be great if the cancer was totally gone, but either way it means radiation.

These are all the possibilities for this fourth occurrence of Hodgkins Lymphoma and their probable courses of action that I can come up with:

* It's gone, so we'll do follow up salvage radiation like we did before on my left inguinal lymph nodes.
* It's in one place only (right inguinal lymph node), so we'll do targeted radiation to remove it completed.
* It's in more than one place, so we'll continue chemo (for up to four more doses) as long as it's responding (shrinking) to the Adcetris.

Dr. Wendy reads part of the PET report to me. There's still lymphoma in my right inguinal lymph node. Originally, it measured over 19 on the activity level of the PET, now it's barely over 2. But there's no activity anywhere else.

Okay, no real surprises there. So all of the other eight spots that originally showed cancerous activity are gone. And the one remaining place is so, so close to being gone that chemo won't reach it anymore. So she's recommending me to Dr. Jay Clark for radiation treatments.

I don't know how those treatments will differ (if at all) from the salvage chemo I received last time, but that was easy with no side effects. Hopefully, it will be more of the same this time.

Oh wait. What about the possibility of a second bone marrow transplant, I ask. When should I follow up with the BMT team at LDS Hospital?

With a slightly surprised look, Dr. Wendy responds that I should probably consult with them before doing any radiation treatments because she doesn't want the radiation treatments to conflict with anything the BMT team wants to do. So wait to hear from LDS Hospital before scheduling with Dr. Jay.

Whew! It's a good thing that patients advocate for themselves and keep their doctors on track.

I wait to hear from Rachel Beers at LDS Hospital. She feels like one of my best friends by now after being the point of contact throughout the entire autologous bone marrow transplant process. She got a very terse message from Dr. Wendy's office and calls me for clarification. I'm able to clarify that the lymphoma is very close to being gone but needs radiation and we don't want to proceed with that step if it will interfere with the possibility of an allogeneic (from a donor) bone marrow transplant.

After checking with Dr. Julie Asch (another friend by this point of my life), she assures me that I can proceed with radiation.

I call Dr. Jay's office, only to find out that Corinne left early and forwarded all calls to, what seems like, an older female friend. That person isn't in the office and doesn't have access to the appointment books so now I have to wait for Monday to call. Annoying because I'm supposed to be covering for my team at work while they attend a conference in San Diego. I don't know whether to go to work on Monday to cover for my team or try and work from home with the hope that Dr. Jay can fit me in his schedule on Monday.

Why do health professionals have to take off before 4:30 p.m. on Friday without any way to get answers to pressing medical questions?

Broken Ankle Follow Up

Dr. Garrett asked me to return for follow up x-rays on my left ankle about two weeks out, and it's been two and a half weeks, so I head back to Urgent Care in Lindon.

Dr. Garrett is out on Spring Break, but a nurse practitioner is available to see me, so I head back to x-ray to get follow up images.

I never asked what part of my ankle I broke, so I ask the technician if I can see my earlier x-rays to see what I broke. She needs to know what x-rays to do, so she pulls them up and the formal report from the radiologist who read the x-rays after I left Dr. Garrett a few weeks ago.

She pulls up the x-rays and shows me where an earlier break of my malleolus occurred. (The malleolus is the rounded bony prominence on the outside of each ankle.) She can tell it was an earlier break because the edges are all rounded and smooth--evidence of a healed broken bone. And she points out the sharp jagged lines of what Dr. Garrett assumed was where I broke it this time. It's a smaller break, about a quarter of the size and behind the earlier break.

She pulls up the radiologist's report and we read together that he notes the earlier break but doesn't see evidence of any other breaks.

Wait a minute? I've been clunking around in that stupid boot when I didn't need to? Forget that! I'm ready to be done with the walking boot. Hooray!

The technician doesn't want to subject me to more radiation for a non-break, so back to the waiting room I go to wait for the nurse practitioner. She's fast and a few minutes later we're discussing my foot. She's looked at the old x-rays and the radiologist's report and is absolutely convinced I have broken my ankle and doesn't really know how to explain the report--except that radiologist's in her opinion can't be trusted.

She proceeds to tell me about a violent pain she had in her stomach for a while ago, insisted upon CT scans, and read the radiologist's report that all was normal. She insisted on seeing the pictures herself and noted lots of fluid accumulation right where she was feeling the pain. Turns out she needed surgery but felt immediately better after the surgery.

I recounted my own recent experience of having a CT scan to track the progress of chemo in shrinking the tumor in my right inguinal lymph node and not having the radiologist even mention the lump in his report. Then having to have them go back into the scans, measure the area, and add an addendum to the original report with the new measurements.

I can understand how they might miss a small break if they miss measuring a tumor that we've been tracking for several months now and were asked to compare the size to previous scans that were done at the same place (Central Utah Clinic in American Fork).

So back to x-ray we go to compare old films to new films to see if it's healing. The malleolus is supposed to be one bone. It looks like the new break is healing but it's not healing or attaching itself to the malleolus; instead, it's a separate little disk of bone that's just out there by itself.

She asks if it's causing pain. (No, because I can't feel my feet due to the neuropathy.) And then suggests that I come back in another two and half weeks to ensure that it continues to heal. If it was causing me pain or making it more difficult to walk, she recommend surgery. However, it's hard to tell if it needs surgical intervention because walking is difficult anyway, and I can't feel my feet.

The comedy of errors that is my life--it isn't broken, but wait it really is--continues!

PET Scan

I was too sick with bronchitis last Thursday when the PET scan was originally scheduled, so it's rescheduled for today at 12:30 p.m. at Huntsman Cancer Institute.

It's a beautiful building with amazing materials and gorgeous stone that high on the mountainside behind Primary Childrens and the University of Utah hospitals. Just walking in seems like entering a place of authority that knows what it's doing and calm assurance.

I get to third floor radiology and am almost immediately taken back for the PET scan.

Whoops, but my port isn't accessed and the technicians haven't been trained how to access ports. Weird, because I swear that last time, they accessed it okay.

But they have to find someone else that can access ports, so I'm wheeled off to mammography or the breast health department (trying to balance a large oxygen tank and it's cart on top of the arm rests) that's just down the hallway.

I'm amazed to watch as the nurse in the lab has to use sterile technique to access the port and even comment about it. It's interesting to see the different protocols that different medical facilities use, because Dr. Wendy's clinic (which is part of Huntsman Cancer Institute) doesn't use sterile technique, just a fresh pair of gloves to access my port.

The port is successfully accessed, so I'm wheeled back to radiology where the radioactive isotope is injected and the long waiting period begins.

The lights are dimmed, I'm covered with two warm blankets, and I proceed to rest quietly (without moving) for 75 minutes. I'm getting pretty good at accounting for the passage of time because just about when I think it's been 75 minutes, the doors open and I'm whisked off to the CT/PET machine.

No oral or IV contrast, and the scans are complete in about 35 minutes.

I'm free for the rest of the day. Well, as free as I can be with a walking boot on my left foot and dragging a large oxygen tank and its cart behind me. I even manage to snag a fun size Twix bar from the valet attendants that's left over from Easter (because I've been fasting since 6 a.m. and it's now after 3:00 p.m.).

Now to drive back home.