All Tatt'ed Up

It's been a big week and Charl is tired, but we've mercifully gotten to the "one month after his last chemo treatment" stage, which is the time we anticipated it would take his bloodcounts to recover. Granted we were very careful of avoiding crowds etc, but he didn't get even so much as a sniffle during this time. This is rather remarkable given that his immune system has been beaten to a pulp over 6 chemo sessions, and he didn't have the benefit of the immune booster injection this last time. We are very grateful for no sickness, no fevers, no more ER visits. He is getting stronger, has more energy throughout the day and is able to do more which is celebrated by both of us!

In preparation for radiation, Charl had two tasks: get another CT scan, and get tattoos. The doctors take the CT scan results and "map" out where best to do the radiation. Knowing next to nothing on the topic, hearing just the little bit the radiologist explained to us sounds like it is a very complex and intricate process, and understandably one that is critically important to get right.

Once they know where the radiation will go, they insert dots of pigment onto Charl's chest, in the areas they will be radiating. They do this with indelible ink so it doesn't wash or rub off during the course of the 20 treatments, and also thereby avoid radiating the wrong body parts. The tattoos look very much like small black freckles, and they gave him three: one where the tumour is, and one on either side of his ribs, way around the sides. Don't have any further info on why they are on the sides, but we expect they do know what they are doing.

We haven't received a firm date yet for radiation start date, but we expect it to be within the next week.

Next Phase

In the professional, concise manner we’ve come to expect at the TBCC, Dr Trotter, the radiation oncologist, explained to us the results of the PET scan. To do this she showed us photocopied PET scan images of Charl's midsection from different angles: front view, side view, cross-section. The images were in black and white and varying shades of grey. His heart, bladder and other organs were shown as solid black. His lungs and spine were represented in solid grey. Other fleshy areas, say around his chest and arms, were very light grey.  What they are looking for is active cancer cells, which manifest on the PET scan as darker areas (to be clear, they know the abovementioned black or dark grey areas are not cancerous). The darker the area in or around the tumor, the more active the cells. So we knew when we looked at the results, the cancer was still present.

We had prayed, and hoped, for the best outcome, the outcome where the tumor would be miraculously dissolved by the chemo with not a cell of it left. But we also prayed for the ability to accept the results as they came, even if it was not what we wanted to hear. In fact the tumor hasn't shrunk since the last CT scan in April. You could still clearly see it in his chest. In medical terms, 'a rim of moderate hypermetabolic activity remains in the anterior mediastinal mass.. And the overall findings are consistent with residual active tumor.' The center of the tumor is dead (this is good) but the cells around it are not. It actually looks similar to a donut, from one angle anyway. They know for sure that some remaining cells have indeed been impacted by the chemotherapy and will in fact divide and die. But they can't be sure all of the remaining cells are of that type. If remaining active cancer cells are not of that type, they will eventually spread. And Charl will be facing a bone marrow transplant.


So how bad/good is this news?

After we both asked many questions and after receiving very thorough answers, we feel like we understand at least enough to know what risks Charl faces by not doing radiation, and what risks he faces by going through with the radiation treatment. Charl has two options: Option A, he could choose to wait, observe, and see if it comes back. If it does, he would have to undergo a bone marrow transplant, as it has already clearly been shown that not all his cancer cells responded to (died from) chemo. I don't know if any of you know someone who has gone through a bone marrow transplant but I would give my right arm to prevent Charl from having to go through that.  Option B, if he completes the scheduled combination therapy by undergoing 20 days of radiation now, there is a very good chance those remaining cancer cells will be killed. There are increased risks of other health problems down the road, of which I won't go into here, but he felt these were less of a risk than not attacking the cancer immediately with this present course of treatment. It wasn't a hard decision, but it was definitely one in which Charl was acutely aware of the both sides, their benefits and risks.

So what does this mean, really?

It means in order for Charl to get a 90+% chance of cure, he must endure some  unpleasant side effects of the radiation, plus a longer recovery until his life gets back to normal. For one thing, he is willing to do that, and for another, he promised me 60 yrs of marriage, so he has to go through radiation. (Yes we planned to live to 99 and 104 respectively, and we still do).

Waiting..

The PET scan came and went, a scan from his knees to his head, and in Charl's opinion, he's glad it's behind him. Now we wait until the 17th to hear the results: do they see active cancer cells (positive result) or not (negative result). If positive, he needs radiation. If negative, he doesn't.
Now we wait, and hope, for the best results.

PET scan

Since the discovery of Charl's Non-Hodgkins Lymphoma he's had many tests. The pinnacle of these tests is the PET scan. This is how petscaninfo.com describes it:

"PET is the most useful test that you can have when doctors are staging or re-staging lymphoma because it accurately shows the extent of the cancer.

How PET works:
In cancer, cells begin to grow at a much faster rate, feeding on sugars like glucose. PET works by using a small amount of a radioactive drug called a tracer in combination with a compound such as glucose. Once you are injected with the tracer and glucose, the tracer travels through your body. It emits signals as it travels and eventually collects in the organs targeted for examination. If an area in an organ is cancerous, the signals will be stronger since more glucose will be absorbed in those areas. 


In tissues or organs affected by lymphoma, more of the radioactive glucose will be taken up as compared to normal lymph nodes and tissues. This helps the doctors understand exactly where the lymphoma is. Proper staging of the location and extent of the tumor is the first step in appropriate treatment. Moreover, once treated, patients are often re-staged to determine the effectiveness of the treatment. In addition to providing basic staging information, the initial PET scan provides a baseline for subsequent evaluation of whether the therapy was effective or not. Whole Body PET may be particularly useful in detecting extra nodal sites of disease such as bone marrow, liver and spleen. 


The treatment of lymphoma has been one of the true cancer success stories of the last 20-30 years. Continued improvements in chemotherapy and radiotherapy have resulted in better survival rates. After first showing the doctors where the cancer cells are, PET can also see if the therapy has been effective at killing them."

We go in for what we hope is Charl's first and last PET scan on Friday June 4. We then have a consult with a new doctor, a Radiologist, who on June 17th will explain to us the results of that test; if the cancer is gone, or if he needs to undergo further treatment (radiation). We would appreciate any prayers for his total healing and full recovery.