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Hi Everyone! I am still here and alive! Sorry I have not posted for awhile. I have been quite out of it the first couple of days after surgery and then crazy busy with doctors! Yesterday, my room was a rotating door with docs and people from various specialties coming to see me. I remember at one point looking at the clock and it was 8:30 a.m. Next thing I know it is 6 p.m.! The day just seemed to breeze by.
A couple of updates:
1) Dr. Kukinoor had a conversation with us confirming in his opinion that the cancer is progressing and therefore we need to move to a second line therapy called Tarceva. This is a newer form of chemo called targeted chemotherapy and is in the form of a pill taken daily.
2) Even though there is progression of the cancer, there are no signs of the cancer in any major organs other than the lungs and bones.
3) I still need to schedule a PET scan, which will give a much more detailed overview on the progression and comparison to the baseline, but I cannot go to this until I am out of the hospital (these are done outpatient because of political reasons).
4) I was confirmed to have cellulitus in my left leg, which was causing the swelling and pain initially. From what I understand, this is kind of like a staff infection. I am taking antibiotics for this.
5) The vertebroplasty seemed to go well. I am still in major pain in my lower back, so I am not able to walk yet because the pain is radiating forward to my legs. I have a pain pump that allows me to administer heavy duty opiates directly to my port every 10 minutes to deal with the pain.
6) Because of the heavy duty opiates I am on, the docs are pushing me to look into a pain pump. I have discussed this in a previous blog with my feelings on this and how I have no desire to stick a huge hockey stick piece of metal in my body unless absolutely necessary.
7) I have plural effusion. Tomorrow I am scheduled to have a thoracentesis or “pleural tap” to remove fluid for testing.
The blood clot was confirmed to have grown larger, which is a concern to my oncologist. They have switched up to a new blood thinner medication that is a daily shot in the stomach. My swelling has gone down the past few days, so that is good news; however, for safety precaution, I am going to book a follow-up appointment with the AZ Heart Institute to see about surgery options.
9) Lisa has been in interviewing various home health and hospice agencies in the event that I am home and not able to do certain things on my own, or if caregivers need extra help. She found an agency that she liked called, “Hearts of Hospice,” and apparently they come to your house to help with showering, medicine, cleaning, etc. I am not sure that I am at this point, but it doesn’t hurt to look into it. The hospice part I definitely don’t need as of yet; however, they have a smaller sector that specializes in home health and our representative thinks that he can sneak us past insurance politics to use the hospice to do things such as running errands, making meals, cleaning, etc. This would all be at no charge. I met with them today, so we are just waiting to hear back from them if they can get it past the insurance so I don’t have to pay out of pocket.
It has been exhausting and a little overwhelming the past few days with all of the new information. In addition, I am in the process of working with a group called WhizBang Marketing to create a Web site based off of this blog, only bigger and better! We have also finalized our next fundraiser for June 19, thanks to Kelly and Julie who have worked to get this going. I had my two sisters in town, Lisa and Kathy, for the past week, which was nice to have their support. Both came down last minute when they heard that I was in the hospital. Lisa’s husband Steve is here through next week, and I have an oldtime friend who was like a second mother to me who will be visiting over the next couple of days as well.
I think the news of the cancer progression really scared my family and caused some upset. I have to admit that I am a little disheartened as well after hearing the news. I was a little dissappointed that the oncologist didn’t really have a next step if Tarceva doesn’t work. The timeframe for testing of this is about a month, so I believe we should have some sort of plan for next steps. That’s why I am pushing to get this PET scan done so we can send out the information and charts to some of these out-of-state clinics for second opinions. The Cancer Treatment Center here is supposed to be wrapping up their negotiations with their contract for my insurance, but who knows when this will be completed. I would like to include them in the options, but I will need to visit them soon.
After discussing further about the “progression,” it turns out that this is really just the term used because there are signs of the cancer furthering, such as the blood clot not healing, the plural effusion, etc. It does not necessarily mean that I have the cancer taking over. My big concern right now is regaining my strength to walk again so I can have some freedom and get out of this room. I have been in here for about 10 days without being outside. I think I have been in bed for a total of three weeks now, and I am sure that my muscles have lost a decent amount of strength. I believe that the internal medicine doc said that they were going to send a physical therapist down to help out.
Link to blog: http://themelissawaller.wordpress.com/2009/06/05/still-here-2/
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I really admire the way you are handling everything. What courage you demonstrate.
June 9, 2009 - 9:15pmAnna
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