The MRI was last week. One of the first questions they ask the patient is if he/she is claustrophobic. Then they ask if you have ever had a reaction to the contrast that they will be injecting. Do you have a pacemaker, or any metal implants, has a piece of metal ever flown into your eye? They ask what kind of music you would like to hear while the test is conducted – but really, you can’t hear the music for the clicking of the machine. You lie on a narrow motorized gurney that moves slowly through a short cylinder (open at both ends) while computer generated imagery is gathered as your body passes through the tube. In my husband’s case the MRI took about an hour to complete and the results are in; we meet with the Radiologist on Tuesday, tomorrow. Our family GP has already called us about the scan – just to give us a heads up and so we can ask some knowledgeable questions of the Radiologist.
So we already know that the bone cancer has spread, that he has two new compression fractures in his spine at T4 and T9. Our GP also stated that there was some activity in the Cervical Spine and that the Radiologist would be better positioned to discuss options with us on this issue. The reality of our meeting on Tuesday is that likely by Thursday my husband will be having more radiation to his spine. The radiation, although it does alleviate the pain after the swelling goes down, can be quite a process. It can and did cause nausea and vomiting for my husband the last time and the pain associated with it was overwhelming. It was during the radiation in July/August that my husband could not even lift his legs to get into bed. At least this time we are more prepared and will try to stay ahead of the pain.
The Travellers aren’t going anywhere too fast. The snow just keeps coming!
A few things have happened in the last week that have had some impact on our circumstances. First and foremost, my sister-in-law has been taken off of her chemotherapy treatment. She has had a series of issues with her ileostomy that appear to be aggravated by the chemo she was on. As a result, at her last meeting with the Oncologist, he made the decision to stop her chemotherapy until her stoma has had a chance to heal. She had her picc line removed as well, since the Oncologist believes that it is unlikely that she will be able to commence this type of treatment again. There are other options for her, but until her stoma heals he is reluctant to put her through anything more. It’s somewhat bittersweet – there’s relief that the chemo has stopped, but it is likely short-lived and, as well, there is the ongoing fear of the potential for the disease to return. So although it was nice for her to not have to endure the physical pain and associated issues with her treatment, there is still a need for treatment and this reprieve is likely a short one. At present it is a “wait-and-see” approach. She’s still tired and has limited energy but at least now she can focus her energies on healing.
As for my husband, his cervical spine has been very painful and is draining all his physical energy. He hates taking pain killers because they make him feel dopey but it is better than being in agony. Sleep tends to evade him since finding a comfortable position is a challenge. As a result of his discomfort we spoke with the Radiologist to explore what his options were. Out of that conversation an MRI was scheduled at the hospital to look at his spine to get an accurate assessment of what is going on. So today was MRI day – it was a long scan taking about one hour to complete. We meet with the radiologist next week to get her recommendation on treatment.
We are entering the final days of waiting for our third grandchild to be born, our daughter’s first child. She is having a little boy who already has been nicknamed Chip. She’s had a good pregnancy, but in the last couple of weeks developed a cough and subsequently dislocated a rib. That was about two weeks ago and things had started to heal and then yesterday doesn’t she pop it again – poor kid, she’s in a fair bit of pain and knows that the rib could be an issue at delivery time. This baby has been one of the most key motivators for my husband in staving off his cancer and we are almost there!
The weather here continues to be cold, cold, cold. We have had some serious snowfall and now we are entering a deep freeze. So cold that my outdoors cats will only sniff the air when I open the door to let them out – they sniff and then run back in the house. My little dog lasts about a minute outside, I’ve never seen her be more efficient at doing her business. There are a few more days of this weather and then hopefully it will break. When it gets to minus 20 or minus 30 Celsius the air literally can take your breath away. So no walks for us at the present.
The last couple of weeks have been exhausting from a physical and emotional standpoint. There is a lot going on and quite frankly, it drains one. Sometimes there is no energy left for reasoning, analyzing, sorting, rationalizing, you name it, if it requires logical thought progression it can be a challenge. Emotions, especially powerful ones like fear, despair, anger, frustration, can take away the ability to think things through clearly. That’s kind of where we have been and are – it’s mostly the emotions of fear and despair that colour our world right now and so I have hesitated to write too much of anything. Not because there’s nothing to write, just because what I would write about would reflect a fleeting state of mind and be based on feelings not on fact.
In the interim, we continue down the path of chemotherapy and have just finished the second treatment with Docetaxel. So far so good, no major concern about nausea or vomiting so far – it’s only been about six hours though. We continue to pump the fluids and I am staying ahead of the nausea by giving my hubby an anti-nausea medication on a regular four hour basis. I will do this for today and again tomorrow and then we will reassess on Saturday. It’s been a tough couple of days though. He spent yesterday in Emergency for chest pains. Luckily it wasn’t his heart, but unluckily it was the bone in his sternum – which he has already had radiated once for his bone cancer. The sternum is too thin for any more treatment, but we will visit the radiologist next week to see what solutions she may come up with. The last round of radiation was physically brutal as it was accompanied by significant pain, nausea and vomiting, however, in the long run it did work wonders in pain management after everything settled down. If he elects to have more radiation, my husband will be well prepared for what he will experience.
My sister-in-law’s experience with cancer continues to be quite challenging. After the initial nightmare of surgery and associated complications, she was released home with an high output ileostomy. This in itself is quite challenging for the obvious reasons. She never ever anticipated having an ileostomy, the lifestyle change that it has required is quite significant. The care and maintenance required are very demanding and she has had more than her fair share of challenges in managing this device. The ileostomy is reversible but only after she finalizes her chemotherapy treatment.
The chemotherapy treatment has been hard on her over and above the anticipated side effects. With her first treatment my sister-in-law had quite a reaction to the chemo cocktail even before leaving the hospital. Her hands as well as her neck had turned a bright red – luckily a nurse spotted the reaction and she was whisked back into the Cancer Treatment area and provided with intravenous medication to counteract the allergic reaction she was having. This was her first experience with chemotherapy and it wasn’t even a full dosage, it was a reduced dosage of 75% of the normal amount administered, so likely a good thing she didn’t get the full dose.
She has her chemo treatment every other week. Shortly after receiving her first round my sister-in-law was experiencing another issue related to her stoma – the opening for her ileostomy. It was quite swollen and painful, and the fluids passing had diminished significantly consequently she was worried about a blockage. Prior to getting the next infusion of chemo, she wanted to make sure that there would be no more adverse effects on her stoma as well as ensure that all her medical team was aware of what she was experiencing or if there was cause for concern. Her GP and surgeon advised her that she should be able to have the chemo on schedule and that she should inform the staff at the oncology suite prior to commencing her chemotherapy.
Once at the hospital for her second round of chemo she duly informed the staff about the issues with her stoma. No one was overly familiar with what she was experiencing; after consultations with three oncologists on roster that day, a decision was made to reduce the chemo dose to 50% as well as provide the preventive meds prior to administering the chemo. After the treatment my sister-in-law went home, again with the baby bottle attached to administer more chemo over the course of 48 hours. Thursday past was when she went to the local hospital to have the baby bottle device removed. By this time her stoma was quite painful with sores as well as extremely swollen. When the baby bottle came off there was a fair bit of blood in the ileostomy which was quite worrisome. A quick visit to the surgeon eased her mind somewhat but not entirely. He was satisfied that her ileostomy was not blocked since some fluid was still coming out, but thought that she may have developed a condition known as mucositis in the gastro-intestinal tract. There was also a suggestion that they may have to drop her chemo down to 25% dose since she is so sensitive to the meds. This is where she is at now, trying to get a definitive about the mucositis and a prescribed treatment. Today seems to be a better day, and in speaking to her she sounds a bit more optimistic and the swelling seems to be lessening. It’s hard to keep spirits up since every day there seems to be a new challenge but she certainly is trying to look forward and ahead and just get through this.
It’s taken a few days for me to process the results of my husband’s bone scan. It was, and still is, a devastating result.
At the meeting with the Oncologist and prior to having his most recent chemotherapy session, my husband complained about the persistent pain in his left shoulder. In early January he had been for an x-ray and CT scan to access his progress. The Oncologist had reviewed the two scans and in our meeting stated that it appeared that the issue in the shoulder was arthritis. As the conversation continued the Oncologist stated that although nothing had “popped” on the CT scan he could, with the simple click of a button, order a Bone Scan – if that was what my husband wanted. This is how the Bone Scan came to be.
We had met with the Oncologist on a Tuesday, and a Bone Scan was set for the following Tuesday. Two days after our Tuesday meeting with the Oncologist my husband had his chemotherapy treatment using a new chemo drug, Docetaxel. This chemo drug can act as a bone marrow suppressant (http://www.cancernetwork.com/oncology-journal/radium-223-vs-ebrt-multiple-painful-bone-metastases-data-favor-radium-223). “Because docetaxel is a cell cycle specific agent, it is cytotoxic to all dividing cells in the body. This includes tumour cells as well as hair follicles, bone marrow and other germ cells.” (ref: Wikipedia) Four days later he went for his Bone Scan freshly juiced with Docetaxel. I can’t help but wonder if this influenced the results.
At our meeting with the Radiologist she showed us pictures comparing my husband’s first Bone Scan (in July) with his second Bone Scan (in January). Prior to viewing the pics I asked the Radiologist if I would be shocked – her simple reply was “yes”. I was, we were, the image highlights (hotspots or growth) were so widespread that I couldn’t fathom how my husband could be sitting upright in a chair and not writhing in agony. Anyway, we were at a loss for words and just got through the rest of the appointment. In retrospect I wonder if we should have discussed the timing and type of the chemotherapy my husband had just received. I don’t know that the radiologist was aware of this aspect of my husband’s treatment, I would hope so, but I have learned never to assume anything.
As a result of our meeting with the Radiologist my husband was advised to have some radiation to address the pain in his shoulder/neck area and a subsequent appointment was made for today. However, we cancelled the appointment based on our concern about the veracity of the Bone Scan as well the risks identified with the selected radiation spots. We also have learned that Paget’s Disease runs in the family. We plan on waiting until Monday when we can have a meeting with our GP to discuss all of our concerns before we decide on any more radiation. We also need to ensure all information is conveyed to our Oncology team (including the Radiologist) so they are making the best and most informed decisions for my husband with respect to his treatment.
That’s where we are at. It’s confusing and frustrating because we just don’t know what to do next. Now my sister-in-law is another story, again complications and frustrations all around. She deserves a full blog on her issues – which I will work on getting out today.