OK, so here we go again…once more with feeling! I spent two hours last night typing a description of yesterdays doctor visit with Margo and when I went to post it to the blog the internet went down and I lost everything that I had typed. Since it was almost 1:00 AM, I collapsed into bed for a less than restful sleep, determined to never try to post a blog without first saving it as a word document.
Margo’s appointment with the oncologist, Dr. Kline (female), was at 3:00 PM yesterday. We had to wait 2 hours to be seen and when she finally did see us she went into a great deal of detail related to outcomes, prognosis, and possible bad side effects of the treatment. We didn’t leave her office until almost 6:30 PM. The Reader’s Digest condensed version is this: The lymphoma is stage 3, which means that it is not localized just in the neck and it is in the lymph nodes above and below the diaphragm. (Stage 1 would just be localized in the neck where she first felt the lump, stage 2 would be in additional places above the diaphragm but not below and stage 3 is both above and below the diaphragm. I can’t remember which stage 3 was without symptoms 3A or 3B (I think it was 3A); and since Margo has no symptoms that would be the stage. Stage 4 would mean involvement in bone marrow or other organs which is unlikely since she has not had symptoms. However as a routine part of the work-up they will do a bone marrow biopsy this afternoon to rule that out for sure. The treatment for Lymphoma is chemotherapy and not radiation, since it is not localized and we don’t want to risk missing any of the bad cells. The fact that it is stage 3 is not all that uncommon with lymphoma since this is systemic (a disease of the lymph system). Given the characteristics of the disease it is still 70-80% curable. Lower grade very slow developing lymphomas are not treatable and are therefore not curable (they just are there and always have to be checked). Similarly, aggressive lymphomas are typically not curable since they are resistant to treatment. Since Margo’s lymphoma is curable we feel that this is the best of circumstances for her. Also, it is a blessing that the first indication of it was a swelling close enough to the surface of the skin in the neck that she could feel it. The doctor said that often the primarily affected lymph nodes are much deeper and so it is not noticed until the cancer is much more advanced and there are serious symptoms. After speaking with Jed last night and previously he reminded me that the oncologist that they met with at the Mayo Clinic in Scottsdale said, “People will tell you that it’s a good thing that this or that is or has happened, but the reality is that there is nothing good about this…it is cancer! I am sure that this is all too ‘fresh’ for Jed and Jamie and I find myself regretting not having tried to do more or be there more for them. You can have empathy after fashion, but is really true that it is not too hard to get along with someone else’s troubles unless you have been there yourself. Jamie and Jed are our examples of courage and fortitude indeed!
The chemotherapy will be administered every three weeks in 6-8 courses. After 3 months she will have another PET scan and if it is clear they will do 2 more chemo treatments and it will then be over as long as she remains cancer free except for 3-6 month follow-up checks. If the scan is not clear they will do two additional courses and check again. The drugs they use are abbreviated R CHOP (I believe that is right but I don’t remember the names since the amount of information was overwhelming). I do know that one of the drugs is an antibody and one is a steroid and the other three are cyto-toxic cell killers. Side effects are varied but most significant is hair loss at 2 weeks, nausea, malaise, chronic tiredness and lack of energy. But we were cautioned not to pay a great deal of attention to horror stories heard from others or things on the internet, since everyone reacts differently.
Prior to beginning the therapy Margo needs to have the bone marrow biopsy, and echocardiogram (to establish a baseline of heart function) since one of the drugs can affect the heart, to have a port surgically inserted in her arm or shoulder for administration of the chemo and a regular CT scan to establish a baseline of the size of the lymph nodes. If all this can come together in the next week we could start chemo as soon as a week from today. But this needs to coordinate with our schedule for travel and other events that we have already planned. (some of which may need to be cancelled). We are also trying to decide if it would be best to start the week after next so that we get past Christmas and so that she won’t lose her hair prior to Jon’s departure. One of Margo’s biggest trials will be just sitting there for 6-7 hours while the chemo is administered without anything constructive to do. It will seem like wasted time to her.
Needless to say there were many tears shed again yesterday and Margo though tough and determined, is mad (not at anyone but at the circumstance and the disease). If you can even imagine Margo mad… Her response after leaving the doctor was: this is way too much information… let’s Go, Fight and Win! Interestingly as we went down the hall to the oncologist we passed a cosmetic dermatologist’s office window that had a vinyl letter sign that said ‘Weapons Are Not Allowed’. I wonder how many times someone had to come in armed and dangerous for this to be enough of a problem to post that sign. It occurs to me that it would have been more appropriate at the oncologist office.
I am uncomfortably numb and we are all trying to cope one day and challenge at a time. We just put our daughter Jessica on a plane to London this morning for her mission which would be difficult even under the best of circumstances. In my heart of hearts I feel that Margo will be fine and that she will respond well to the treatment. As we listened to the over the top medical detail and informed consent, I could only think of our ‘secret weapon’ the love, support, concern, faith and prayers of many, many dear friends and family and the power of a priesthood blessing. I am promised in my patriarchal blessing that I will have the privilege of laying hands on the sick and anointing them with consecrated oil and seeing them be healed. I am absolutely convinced that this is true. I truly believe that things happen for a reason and I have often prayed and continue to pray for the courage and strength to face whatever comes our way. I in no way believe that Margo’s sojourn here in mortality is meant to be over. I also know that sacrifice brings the blessings of heaven and with two missionaries serving simultaneously we are expecting a dump truck load of blessings. We are so appreciative of all the many expressions of concern and love that we have received and for the many prayers offered in Margo’s behalf. We are truly blessed to have such dear friends and such an amazing family.