Tres Veces: March 2009

Some pictures

All of the Prescriptions ended up on one counter, and it was kind of overwhelming, so Katie took a picture

Also - pictures of the marks they made on my body for the radiation. These are all stickers. The second one shows the where the tumor is located in my spine. The machine rotates, so the radiation is both in front and in back.

4th Time?

Sorry it has taken me so long to post an entry. A LOT has happened... here is a quick update:

Since Feb 10th... I have been recovering from Surgery. We left Indiana on the 24th (after the chest tubes were out - (see previous post - it sounds worse than it looked).

Since we've been at home, I have just been taking pain killers, mostly because I still have back pain (The back pain is the reason I went to get the original CT Scan), but, after the operation, it seems as though the the back pain had moved around.

We had our follow up on March 10th and we did a blood test. The AFP levels were down (tumor markers for testicular cancer) we were excited, BUT I still had a lot of back pain. The doctor believed it was residual from the surgery and was actually surprised that I wasn't in MORE pain (the thoracotomy does that). We requested a bone scan and did that Friday March, 20th. I also saw a Physical Therapist to see if she could do anything... but the back pain continued, AND got worse through the weekend. The pain settled in a different part of my back on the other side and around to my chest.

Monday we called the doctor and I went down at 1pm to talk to them. They did more bloodwork and an EKG. They ordered a CT Scan to see if it was a Pulmonary Embolism, but were not able to do it at University of Colorado Hospital (UCH) because the ER was swamped and we would have waited at least 6 hours. So we went to Boulder Community ER and got right in. The CT scan was negative for Pulmonary Embolism (PE). They offered to admit me for pain management, but I wanted to go home. UCH docs said that an MRI would be the next step if the PE was negative.

Tuesday AM after a long night of little sleep, I had Katie call the doctor's first thing in the morning. We went in and they started IV fluids and pain killers. They also gave me anti-nausea medicine that put me to sleep on the exam table. The MRI was scheduled fairly quickly, but it takes about an hour to complete and then we were back to the exam room.

At around 5pm, the doctors and nurse came in to tell us that there was another tumor. This tumor did not show up on the CT scans OR the bone scan. The location of the tumor is the most alarming. It is in the T4 of the spine (think top of breast bone but on the back - there will be a picture later to see more) The tumor is IN the bone, destroying the bone and pressing on the spinal cord. AHA - finally the source of the pain?

Immediately they gave me a high dose of steroids to shrink the swelling and provide some pain relief. Then I was admitted to the hospital. The docs from radiation came in to talk about the next steps in treatment. I have been prescribed 10 doses of radiation. These happen 1x/day on weekdays.

We finally got to a room at 11pm and found that it was a shared room and was not on the oncology floor (sigh). Russ and Katie found uncomfortable places to sleep and camped for the night. I didn't get much more sleep in the hospital bed because Neurosurgeons were in and out every 1-2 hours to make sure that my motor function was OK. (testing strength, feeling, movement) I passed with flying colors!!!

Wednesday we saw a ton of doctors, asked them a lot of questions. (see last post for some FAQs) the steroids seem to be working because the back pain is much less now.

FAQs

Katie sent this email to the email list, and it seemed helpful... so here is a repeat for some:

FAQs:

Is this the same cancer?
A: it is very unlikely that it is something different (we will be pushing this issue a lot), there is no indication that this is anything different) - one of the reasons is that we are measuring the AFP Levels, which are an indicator for testicular (and one other kind) of cancer. We cannot be 100% certain that it is unless there is a biopsy. (which we are not sure if they are going to try to take) also, it is extremely uncommon for a cancer to Start there.

After radiation - is that it?
A: no, but the next course of treatment is not yet determined. It could be more chemo, it could be another surgery, it could be something else.

Wait - you said Chemo - I thought this wasn't reacting to chemo
A: yes, this would be a different chemical regimine... though that is still TBD

Why all these TBDs?
A: because radiation comes first. After radiation, we have to understand what we still believe we are up against.

Are you going back to Indy?
A: probably not. Dr. Glode is in touch with Dr. Foster and Dr. Einhorne in Indy and they are consulting about the treatment (we also understand that there was another Dr. consulted who is an expert nationally, though I do not know his/her name.) On the other hand, we may want to consult with these doctors ourselves. ... so I guess we have another TBD.

What about those great test results you were bragging about last week (AFPs)?
A; The results are still good - the AFP levels changed because MOST of the tumors were removed. The next test that I thought would be normal ... probably wouldn't have been... but we are finding this out earlier than if we had waited for them to do the next test. Basically, they still shouldn't have been that high if all cancerous tumors were removed.

Why Radiation and not Chemo - or Radiation and then chemo? and - what about surgery?
A: because of the location and the size of the tumor. (location - in the vertebrate and pushing on the spinal cord, size - like the tip of your thumb beyond the joint) radiation is the first step. This will stop growth of the tumor, give Allen some pain relief and potentially shrink/destroy the tumor. Radiation is used when there is a specific target (chemo will target the whole body) the tumor is in a dangerous place and this is the fastest way to attack it (surgery is risky because of the location of the tumor)

What are the side effects of Radiation?
A: very little. There is not pain associated with the treatment. Side effects are sore throat, cough, adema around the tumor (which is being treated with steroids)

Why didn't they catch this before? / Was this Missed?
A: This only showed up on an MRI scan. They only do MRIs on very specific parts of the body, and until he had a major complaint, there was no reason to do one.

Wait a second - he has had back pain this whole time - he HAD a complaint.
A: this was answered with the CT scan... or so they thought ... OR this is a new growth and wasn't there 6 weeks ago. (they CAN grow that fast!)

What about other tests? What else can they do?
A: Allen had a PET scan today (results not back yet) we will continue to test everything possible to get this GONE!!

Is Allen still in Pain?
A: the steroids they gave him were for 2 reasons. This is common pre-radiation and also reduces swelling which has given him some relief. He IS still complaining of pain, but it is much less than before and meds are helping.

Are you still seeing NeuroSurgeons often?
A: they are coming by more like once/day and their visits are less intensive... fewer tests on his body functions (strength, if he is feeling specific sensations, if when he closes his eyes, does he know what they are doing to him - get your minds out of the gutter - this is all G rated)

When are you leaving the hospital?
Friday - depending on the time of radiation treatment and how he is doing to make sure they are OK with him going home. (due to the blizzard out here in Colorado, Allen may not get a radiation treatment tomorrow - but they will still send us home)

Can we come visit (the hospital)?
A: Totally - We are not in a private room (which is a huge exercise in patience)

Can we come visit you at home?
A: Totally - as long as you are OK with the mess of a house... absolutely. Allen loves his people and would love to see anyone who would like to visit.

What about the Blog?
A: this is on Allen's list of things to do. Right now (literally - right now) he is sleeping and he NEEDS it!!

How are you guys doing?
A: this is a challenge. we are frustrated and tired. We really love all the positive messages you are sending because we really need it (well I should speak for me - I really need the reminder... this feels like a roller coaster - I thought the ride was over, but here we go again.)