Malia is a full-time RVer and was recently diagnosed with cancer. She is graciously sharing her journey with us. See her previous post HERE.
by Malia Lane, Malia’s Miles Blog
Even before my terminal cancer diagnosis, I have always been told how brave and positive I am. I have always asserted that I most certainly am not always either one – I believe that’s way too heavy a burden to put on anybody. So today I’m going to write about a prime example to show my scared and negative side.
Right now I am absolutely enraged at what I’m learning about health care in our country as I go through this journey of just even getting fully diagnosed, tested again and again, second opinions on it all, reams of papers to fill out for every single doctor, surgeon and hospital (why can’t there be a central database for this stuff?).
It’s not been a smooth path from the moment I found the lump while in Tucson in March, traveling to Colorado where I got the dire diagnosis in May, then hightailing it to Oregon where at least I knew if they were right that I would die soon, that I could do that on my terms without being in constant pain. (More on this later.)
Of course, this was all complicated because I was on the road, seeing different doctors and having to go through a ridiculous maze just to get records transferred to all the various doctors’ offices. I won’t go into the details, because I don’t know if anybody would believe the rampant uncaring attitude and incompetence I’ve seen in this process by all but a few offices. It is truly mind-boggling and spirit-killing to see this in the medical field that we all believe is there to help us in our time of need and when we are most scared and vulnerable.
When I had my first consult with the oncologist here in Oregon on Monday, I posted on Facebook how impressed I was with him and his whole office:
Grateful for the oncologist visit today – not only is the doctor totally awesome, but the entire staff was caring and efficient. That’s something I certainly haven’t experienced in every office I’ve had to deal with these last few months. OK, quick update, because of course, I knew it would come down to more tests being needed. So blood was drawn today, another CT scan scheduled for next week, and I agreed to a more extensive biopsy that will have to be done surgically to be scheduled as soon as possible. He explained that with a bigger and better sample of the worst lymph node, it may help identify things having to do with the DNA and other things I don’t need to understand at this point. He talked about some kind of targeted therapy more defined than normal chemo, as well as immunology. But that is all to be determined after more tests. He emphasized he wasn’t talking about a “cure” but a way to increase the time and quality of life in the meantime. I’m OK with that. All is well, and that’s all I know for now.
Before I left his office, he asked if I needed anything like pain meds. Since I had told him during the exam that I really wasn’t in any pain and the soreness I felt on the right side of my neck (where the most enlarged lymph node is) was really not that bad, I was even a little surprised at the question. What discomfort I had was being handled nicely by the CBD cream and basically, I was opposed to and afraid of heavy drugs unless really necessary and I wasn’t at that point. He said to just call if I needed anything.
But, oh how quickly things can change:
Tuesday night, for the first time, I suddenly became aware of a tight feeling in my neck on the left side. I could then feel a large lump there where I never could before. It was definitely more noticeably painful than the one on the right had ever been. As the night went on, it became more painful, and I noticed if I touched it, or coughed, it was even more so.
By the time I woke up in the morning, the pain was much worse. It was always noticeable now, not just upon touch. Is this because of position and maybe pressing on nerves unlike the one on the right? I took a couple of extra strength Tylenol and called the doctor’s office.
Wednesday morning: I told them I thought this was a drastic change in my condition from when I had just seen the doctor on Monday. The left side node was noticeably swollen and increasingly painful. I wanted to be sure the doctor knew of this new development. I had a few questions: He said the biopsy he suggested was meant not only to get a better sample but cutting that large node out would make me more comfortable. So I asked if they could do the left side instead of the right since that’s the only one that hurt. I also told her the pain was bad enough to make me take up the doctor’s offer of pain meds now since the Tylenol wasn’t doing a thing. She said she would get a message to the doctor and someone would call me as soon as possible.
Of course, she asked me to rate it on the scale and I admitted to being a wuss when it came to pain, but I’d say from 4-6 depending on if I was still or coughing. But I really wasn’t used to pain at all and besides that, this new development really concerned me. I told her I hadn’t had much experience with doctors, that I had always been so healthy that I hardly ever got colds or the flu. I also told her that all the other tests of my various body parts and organs came out clear. So I guess I’m the healthiest person ever who’s dying of cancer. Stupid joke and nobody laughed.
Thursday morning: Still no call. I called again and told her that the pain was bad enough last night that I couldn’t stay asleep even after taking my sleeping pill. It’s a mild one, so I ended up taking two a few hours apart, but I still slept fitfully and woke up in pain that morning. I told her the doctor said I could call for pain meds and what was taking so long? She promised to have someone call me that day.
Friday morning: Still nothing. I left this message on the patient portal that supposedly gets to the doctor: (I’m still not revealing names yet, but may resort to that after I find another doctor.)
I was really impressed with Dr. _________ during our appointment on Monday. I told him then I was really in no pain and we discussed a more extensive biopsy. CT scan was scheduled for the 24th and he said he would have surgeon call me for that review. But suddenly on Tuesday night, I became aware of pain on the left side I had never felt before; much worse than the right side we had always been aware of. It seemed to have ballooned overnight and pain constant and much worse when I cough and really bad when sneeze. Since then, each day I’ve spoken to [named three different people], and they said they would have a nurse or Dr. ______ call me. I can’t believe I still have not heard anything! Then the surgeon calls to say Dr. _________ wanted him to see me ASAP and they could work me in for a consult on Monday. But you didn’t schedule the CT scan until Tues. How can he review what you didn’t do yet? When a patient has been told they’re dying and now in pain, how can you be so careless?!
I received a call back from the HR Director because the Practice Director is out of town. My doctor won’t be back until Tuesday, and she doesn’t understand why he didn’t call me on Wednesday before he left on his vacation. She went and spoke to the on-call physician and was told she thought it could wait for the doctor’s return, but if I didn’t think so, I could go to the ER or urgent care center. Wow, lady, are you serious?! Nobody there can prescribe even the mildest pain medication for a patient who had been told just to call if she needed anything?! If that office is that busy or the staff just that uncaring and incompetent, I’m going to find another doctor. I guess I should have had a clue when they drew blood that day, but then called me back the next day to come back in to give more because they didn’t get enough. All the way there, I was freaked thinking they had found something drastic they just had to retest. But when I got there and demanded an answer, they admitted they just dropped the vial and spilled it. I was even kind of relieved with that answer and just chalked it up to accidents happen and don’t cry over spilled blood. That would have been the end of it except for all that happened afterward.
I promised I would write honestly about all my “adventures,” and I’m going to continue doing that, even when they’re not all bright, shiny and happy with beautiful pictures.
So if you want to see the depths to which I can sink, check out this song, because this is the honest truth of how I’m feeling now.
This is not the time to try to talk me out of anything, make me feel better or give me advice on what you think I should do. This is me venting and serving up the proof that my “faith is not always high.”
I may or may not feel better tomorrow or the next day. I’m just dealing with the pain for the time being with more Tylenol, CBD cream, and sublingual drops. I can’t really tell – maybe it helps some, but not for long. I guess it’s unreasonable to expect I’d be completely pain-free having lung cancer. I supposed the most I can hope for is to hang in there with it until I qualify with a six months to live diagnosis and make the decision for myself when I’ve had enough.
To further complicate things, Medford’s air quality is rated dangerous for the next few days due to smoke from wildfires all around, so I’m not about to get outside. I feel it ridiculous for me to have to go to an urgent care center to tell them I’m being seen by an oncologist for terminal lung cancer, but I couldn’t get pain meds from his office because he was on vacation. I’m sure I’ll look like a junkie, and I’ve never found those kinds of centers particularly useful anyway.
So for now, I’ll keep the appointment next week for the new CT scan and then the consult with the surgeon to see if I’ll even agree to whatever kind of biopsy he thinks is necessary or if it would help in any way. When I next see the oncologist, I’ll make sure he understands what I think of his office’s treatment. At this point, I’m totally disgusted. I don’t trust any of them and honestly believe they’re all basically just in it for the money. Even if they care at all, the system makes it impossible to operate outside the establishment, sick as it is.
I’ve always said I didn’t trust modern medicine these days. It’s all about profit and big pharma, and I have no respect for any of their ilk. So it occurred to me today to ask why I am continuing to play their games.
After watching my mother deal with endless doctors, conflicting diagnoses, side effects from the dozens of pills she took every day, I also always said I would not spend my life chasing doctors, diagnosis and treatment and taking meds that need still more meds to counteract endless side effects. I’m renewing that pledge today. I’m not up for talking, commenting or justifying anything. I’m just being raw and real today. Life sucks sometimes, and that’s the truth!
Malia you have my utmost respect. I have had some bad medical issues and have had to fight to find doctors willing to listen and prescribe pain meds for when I really need something. It’s absolutely mind boggling the subpar care that’s out there today. I don’t understand how it’s gotten to this point. I tread carefully so I don’t offend my docs but I do stand up for what I need.
I wish you the best. Hopeful that you will get the care you not only need but deserve!
My brother was the primary care-taker of our mother who was bed-bound during her final years. He did a better job of taking care of her than nurses or doctors. They told him so! During the times she was in the hospital, I, being meek and polite, was helpless to all their careless actions. He would explode and all of a sudden staff was running in every direction. The heads of the hospital would show up. It’s sad that when someone is sick, adequate care can only be achieved by . . . becoming aggravated. Today, you as a patient are allotted a limited time slot in the medical treatment industry. You have no choice but to get angry and that is sad.
As a child during the 50’s, I remember our family physician, Dr. Benjamin Skolnick. His office was in his home. When you were sick, HE came to YOUR house – at all hours day and night. He seemed to be always available. On the rare times he was not, you could always reach him by phone somehow. That was during the 50’s and here we are in 2018. Progress? You know better than anyone the answer.
Scott, even when you get aggravated and are clearly in the right, it can still be impossible to get the attention and care you need. I definitely believe in making these sorry places aware of their negligence and putting complaints in writing seem to be the most effective. I do hope the recap I gave that oncologist will be used as a teaching tool for his staff. I have seen him since then and he sincerely apologized, but I’m still not convinced much will change. When people don’t care or take pride in their work or have simple compassion for those they’re supposed to be there for, there’s not much hope.
I also remember my family doctors when I was a kid and when I was pregnant. You wouldn’t recognize the difference in the level of care now. It’s a totally different world today, that’s for sure!
Hi Malia…I am with you, feel for you. Can not blame you for all those raw and honest feelings. I would feel exactly the same. Do consult a hospice like was told to you and get all the moral support you can. Speak up and demand better if you have not already. I am from Tucson and know how awful it is to be in line when you are critically ill. Hang tough, sister. Write any time
Katlyn, I have consulted local hospice and they require a doctor’s referral that says they think you have six months or less to live. The oncologist wouldn’t say that on the first visit on the 16th when I was still feeling relatively good and in no pain. By the next time I saw him on the 25th, he said since the CT scan showed spreading and enlargement, and the fact that I was in pain, that now qualified me for that referral to hospice. So I’m still working through the maze of requirements for that and the Right to Die with Dignity process. It’s not a quick and easy thing, that’s for sure!
Please join hospice home health. Talk to your oncologist to get it started. Once it starts you will have an RN who makes weekly visits to your home
(they will come to your RV) they will be your middle man in all things. Dr calls, meds (very important as it may change daily) . They will step you up as you need it to the next level . Most of this will be done from your RV . Good luck
Sandy, hospice has always been part of my plan since I understood what they do. But you just can’t go in and sign up on your own. See my answer above that I now do qualify and am working on that process. Thanks!
I feel your pain. It is so hard not to be angry about the bad treatment. I keep telling myself not to dwell on the negative but it is so hard. I am not dying but I have had a very difficult time with doctors and medicines. It is a struggle. I pray that you will recover and be whole again.
Hi Barbara, I’m not trying to dwell on the negative, but I’m going to write honestly about the things I am experiencing during this journey just like I have through the 17 years I’ve been traveling. And it ain’t all pretty scenery on this route, that’s for sure!
Sorry for the crappy treatment you have received from doctors even when you find one that is different. I do hope you can get some pain relief. And who cares if you get addicted – you’re dying anyway. (When my BIL was dying my sister would not give him more than one vicodan a day for fear he would get addicted – who cares!).
I know what you mean. I always said if I had cancer after 50 (am 65) I would not get any treatment other than comfort care. 4 years ago I had what I thought was preventive surgery (radical hysterectomy) but turned out I did have cancer. I am cancer free but it was not until months later I remembered what I said. Now may have to consider my husband who has Alzheimer’s Disease if cancer should come up again.
Thanks, and I did finally get some pain relief. I’m most thankful that after taking just a few over a couple of days, the swelling went down enough so the pain is not so bad and I haven’t had to take more. It’s certainly not that I’m afraid of getting addicted – I agree it’s ridiculous to be worried about that at my stage. But I also hope that some combo I’m looking into with cannabis type treatments (CBD/THC oils, creams, edibles, etc.) is my preference, so I’m still researching about that, too.
And definitely no matter what we say when we don’t have cancer can radically change when we find out we do, especially given such a short time frame to live expectancy. I’m still clear on that choice for myself, but I don’t think I have the right to try to convince anyone else what they should do. Everybody’s case is different and I don’t think there is a one-size-fits-all cure. There are many factors to consider, but quality of life will always be more important to me than quantity.