Just the Facts...Uninspired, Mundane, Cut & Dry, B*O*R*I*N*G Medical Journal

February 2017 -  What is this? A question that pervades a great deal of my waking hours. It is not a general question. It is not a spontaneous question. It is not necessarily an answerable question. What's this? I spend long hours driving across the state, one court house to another. One tragedy to another. Advocating for what is always hoped to be truly in the best interest of a child with no voice. Solitary times. Not times of solitude, however. Time for the company of questions that demand attention.

What's this? The crushing pain that squeezes my rib cage. It catches my breath each time; even though I have been living with this for uncountable years now. Or so it seems. What's this? The electrical burn that starts in the axilla and shoots down my inner upper arm and settles near the veins in the crook of my arm. What's this? The catch in my chest that constricts my breathing, one second...two seconds...three seconds...four seconds...breathe into the pain. If it doesn't go away this time . . . . is it something different? What's this? The gripping burn that envelopes my chest wall. Branding of the past nine and half years. What's this? The wave of nausea that rises cold from underneath my sternum. Never hunger. Just nausea. What's this? The lump that incrementally has increased its presence in my groin, making it further uncomfortable to spend any time laying on my right side. Healing sleep still just a memory. What's this? The shivering iciness that swells deep inside my bones; only to be replaced - sometimes within seconds, by a an overwhelming heat the prickles painfully on my skin. What's this? The continuation of the new normal that still makes me look over my shoulder at the shadows that I seem to keep just a few paces ahead of; the marathon that is the day to day. This is all just another day.

March 2015 - Biopsy cam back positive. Round three. This time we double check the 2009 findings of the Onco-Type DX test with a biomolecular profile. Same result. This cancer, even as it evolves over the year, still is not impacted by the available chemo options. Silver-linings? We engage in a trial of three different endocrine therapies. It slows down the cancer. Again, silver-linings. This cancer and its progeny is indolent by nature. More silver-linings. We discover that this cancer also has caused osteoporosis. Rounds of prolia injections join the mix. Prolia has its own issues. Chronic pain in my hips and femurs. Everything has a price tag.

March  7, 2013  - I have been contending with what my ex-cardiologist has diagnosed as "chronic pericarditis." The symptoms and the echocardiogram appear to substantiate this conclusion. So then why is he my EX-cardio, I refer you to my post titled "The Break-up." The "break-up" was put into motion with a horrifically scary Saturday, Feb. 23. As my chest, clavicle, and upper back felt like it was crushing in on itself, and I was dry-drowning as I could not catch my breath, and sharp pain radiated up from under my right rib cage, the only thought that I recall fixating on was: "will this pass....this must pass....will this pass....this must pass...." 1600 mg of ibuprofen, an aspirin (husband thought I might be having a heart-attack), and two hours later it did pass. The 10 days after, while I was recupping, I had no appetite, could barely stomach any foods, and my weight dropped to 97.6 lbs. (fully clothed).

I am feeling better. Not as fatigued as I was. Bit better appetite. I weighed in at a solid 99 lbs today. I don't favor the crypt-keeper as much as I did 6 days ago.

Doc John (NMD) gave me a DMSO IV infusion yesterday. So far, neither the benefits (pain relief) or after effect (smelling like either creamed corn or oysters) as expected have occurred.

My big issue right now is trying to convince Hospice of the Valley, after 3 phone call rebuffs, that I am not ready for, nor desirous of their services right now.

2012 Journal Entries

October 8, still recovering from an early annual bout of pneumonia, shingles, and a fracture to my second toe and small metatarsals on left foot. Been having a helluva time breathing for six weeks. Saw Roger McCoy, MD today. He is a sports and family practitioner and the only M.D. I fully trust. Been with him over a decade. Follow-up chest x-ray showed that the mass in the left lower lobe has not grown. That is good. It also showed thickening in the membranes - not good, and one of the reasons for my inability to catch a full breath, wheezing and dry cough. He suspects Valley Fever. Before we go there, going with in-haler and cortisone shots first. Priority is to breathe.

Also got results of Friday's pet-scan. Looks like the tumor from 2011 has returned. It is accompanied by a "rather prominent uterus with heterogeneous metabolic activity." Looks like I will be busy with follow ups. Round Three - ring the bell.

August 5, my fatigue is getting really problematic. Husband and I had a discussion last night as to whether I should reach out to "my" oncologist. I bracket "my" because I have not heard from her office or initiated any contact with her since late December/early January. The discussion centered on the fact that I haven't had any medical monitoring since the chest MRI in January; and no PetScan since a year ago July. The questions are: so, what? what would I do with the information? anything different than I am doing now? what about the cumulative effect of radiation exposure? poisoning for the sake of knowledge, is it worth it?

July 13, I am doing nothing "outside." No treatments. No monitoring. No screening. No monitoring.
No doctors' appointments. Nothing has changed since January 24. The symptoms persist. Nausea has been added in the last few weeks. Those things that contribute to my perpetual "burn out" continue. The juggling of appointments was becoming a source of stress. The out-of-pocket expenses for alternative treatment was becoming a source of stress. I decided back a few months ago that I just need to be done. I still am faithful to my modified pectin powder supplement. I am conscientious about keeping to a high alkaline diet. I have been reintroducing oral vitamin C (could be the cause of the nausea). Keeping up with my cinnamon, turmeric, curcumin and other anti-inflammatory dietary supplements. I have just taken myself off the cancer-radar.

January 24, I was able to get an Ozone treatment completed, and the chest MRI done. Unlike breast MRIs, a chest MRI is typically done on your back, with a cage-like apparatus affixed to your chest, covering part of my face. No good. Very claustrophobic. Without anything done, other than the strapping on of the external "vertebrae" tears started rolling down my face. We flipped me over in the "traditional" breast MRI pose and I was able to will myself through the diagnostic.

Purpose of the chest MRI:

~Malignant neoplasm of upper outer quadrant of female breast (fancy charting lingo for "breast cancer")
~Chest Pain
~Shortness of breath
~Abnormal chest sounds
~Unspecified nutritional deficiency

Blood work is scheduled for tomorrow, Thursday.

As a result of my discussions with my NMD, which included the above, as well as my inability to focus on work, daily mistakes, befuddled thinking, Dr. John concluded that I sounded "burnt out." He asked what I am doing to address the burn-out.

Herbal-based acai energy shots.

January 11, I restarted both ozone and vitamin C IV treatments. Because of the nausea, Dr. John reduces the concentration of the vitamin C. Trying to get back on a treatment schedule. Slowly reintegrating oral supplements. Most important to keep up with the vitamin D and modified pectin powder.

So very tired. I seem to only be "good" for a few hours a day.

Still working every day. No choice.

January 3, 2012 came down with pneumonia...again. Fatigue. Lethargy. Malaise. Chest pains. Insomnia.

"Reader's Digest" Version of 2011 Events

In July 2011 I was restaged with metastatic breast cancer. The invasive lobular carcinoma has spread into my lymphatic system and possibly peritoneum.

Conventional medical team was pushing for surgery and radiation. Radiation oncologist does not think chemo will be effective at this stage. That's okay. It wasn't on my menu.

Radiation oncologist blatantly refused to do radiation if I did not do surgery. Dr. Coral Quiet gave me a 20% chance of 5 year survival.

Surgical oncologist, Dr. Lise Walker, did not want to do surgery: "very messy" (and I suspect she was very aware of the lack of long term efficacy of a full axillary nodal dissection).

My veins after Ozone IV
Developed an alternative treatment protocol with my naturopathic physicians, which included major IV vitamin C  and intravenous ozone therapies, and plethora of daily oral supplements. Medical oncologist agreed with this for a 3 month period, to be re-evaluated with imaging. Naturopathic physicians develop "plan B" - which includes DCA; and "plan C" - which includes laetrile, if this current treatment protocol is ineffective.

Week supply of daily oral supplements
October 2011 - after making 3 requests with medical oncologist's office, finally got the orders for the 3 month imaging to determine any impact from the alternative treatment protocol.

Breast MRI conducted. Everything look good. Axillary tumor could not be detected. Radiologist puzzled. I am cautiously optimistic. Many questions need answers before I feel I can start my end-zone jig. One of the most important line of questioning is, how inclusive was the breast MRI in picking up the full axillary lymphatic system, the chest wall, and the supporting rib cage -- all areas where I experience daily pain.

November 21, 2011 follow up with medical oncologist scheduled. 10 minutes late to appointment due to car-accident induced traffic (no, I am not involved, just a traffic casualty). End up waiting for an additional 1.5 hours to see oncologist. Appointment needs to be rescheduled - she has no time. No appointments available till well into 2012.

I draft and fax over letter to medical oncologist, Dr. Robin Obenchain, explaining my current physical status and outline all of my questions related to the last 4 months, including, but not limited to the last breast imaging.

Two additional appointments are made in "off times" to allow me to meet with the oncologist. Both are cancelled.

At this time, my "3 month" follow up to the July 2011 appointment and restaging is now set for February 23. Really. My math says that is a 7 month follow up. Good news, I am still here even after having a stage IV MBC diagnosis dumped on me. Something is working. Why do I need to meet with a medical oncologist...information. She is the conduit in which I can procure information.

Between December 2011 and now, my naturopathic physicians' office closed down and they (brother / sister team) relocated and have affiliated with a PCP. Because of work schedule and the transition with the NDs I went 6 weeks without treatments. I also have been compelled to stop the oral supplements because of the nausea and abdominal pains.

No comments:

Post a Comment