New Treatment Plans

When any doctor has walked into the room and told me “I have good news and bad news,” the bad news has been pretty bad and the good news is merely to make the bad news not as difficult to relay to the patient. This was the case today when I saw my oncologist.

The “good news” was that the puss/mucus that the pulmonary doctor removed during my bronchoscopy yesterday opened up the clogged airway in my lung and inserting a stint is no longer necessary. My doctor feared that it was tumor that was clogging it and therefore that was the urgency for possibly doing radiation to that area. Radiation would produce immediate results and that’s why it was considered. I still haven’t received the results of the samples of tissue/cells that were taken during the procedure, but my doctor is sure they contain cancer cells due to the results of the PET. Due to the results of the PET, radiation is no longer an option for treatment at this point.

The “bad news” is that the PET/CT that I had done on Monday confirmed that not only did my new lung mass grow, but the main mediastinal mass in my chest is now growing once again. This of course was the most devastating news. It appears as though the radiation that I had done back in May to that area has finished doing its job and is no longer keeping my disease under control. We knew it would be a matter of time before this would happen, I just didn’t expect it to be so fast.

With all the new information from the last two days my doctor met with the usual Lymphoma experts as well as my BMT doctor to come up with a new treatment. I’ve been so fortunate the last year and a half having had such easy treatments. The side effects were pretty minimal and I was able to maintain a semi-normal life, including going back to work. My doctor has always taken these factors into consideration when coming up with treatments for me. Unfortunately this time, that won’t be the case.

The new chemo that I will be starting will require me to be inpatient. The drug is called Methotrexate and it will be given in combination with another drug called Leucovorin. The reason I have to receive this inpatient is because first I have to be given plenty of fluids (which I hate) due to the toxicity to the kidneys. They will also have to monitor my levels of the chemo in my body closely the first couple of days. 24 hours after administering the chemo they will start the Leucovorin, which will kill off the effects of the chemo. The way this chemo works, is that it attacks the tumor cells within the first few hours and then after that it goes for the good cells. The Leucovorin will help eliminate/reduce the chemo from killing my good cells, therefore not affecting my counts so much and reducing the side effects from the chemo. Since this is a high dose chemo, the side effects could otherwise be pretty bad/intolerable. They will check my blood daily to see the level of toxicity in me and once it’s at a safe level they will let me go home. This could be anywhere from 3-5 days the first time. After that, if all goes well, the hope is to have me be inpatient for 2-3 days and send me home on an oral version of the Leucovorin. I would still have to go in daily for blood tests, but not have to stay inpatient as long. The treatments would be given every other week, so just when I’m starting to recover I will be admitted again for the next round.

I will be admitted for my first treatment this coming Sunday morning. If all goes well I could be discharged on Wednesday. They're hoping to get my 2nd treatment in right before Christmas (12/19), but there are no guarantees.

I usually don’t complain about chemo or let new treatments bother me, I simply go with the flow, but this one is really upsetting to me. This will definitely impact my work and quality of life. Stanford will once again become my second home as it did with my two transplants. The likelihood of having my own room will be small since I won’t be neutropenic at the time of admission and that means Chris may or may not be able to stay with me overnight. Of course having to start all of this during the upcoming holidays is even more depressing. I know I should be grateful that I still have options available and that my oncologist has put so much thought into the best possible treatment considering the circumstances, but I just feel this is really starting to take over my life.

Contradicting Information

Yesterday was a VERY long day at Stanford. I got there at 9:45am for my first appointment with radiology oncology and didn’t get seen until 12:30pm. Fortunately I had a very good book to read and Chris had his laptop to do some work. I must have met with the radiology doctor for 10 minutes before I was off to my next appointment with the pulmonary specialist. After that I had just 5 minutes to get back to radiology for my PET/CT scan. I thought that’s all that I would be having done, but as it turns out they also made my body mold and took some pictures of my old tattoos and past treatment areas. It was about 4pm by the time that was all done with (and I finally got to eat something). Then I had to go have some labs drawn for my bronchoscopy today. We finally left Stanford around 5pm!

We received a lot of contradicting news from the doctors we saw yesterday. The radiology oncologist told us that he wasn’t sure whether I would be able to have more radiation to my lung. Even though that wasn’t exactly the area that was hit before, he needs to see the results of the PET first to determine if they will be able to come up with a safe treatment. He also said there was an additional area of growth (next to the mediastinal mass on my chest), but they weren’t sure if it was new growth or an expansion from the collapsed area of the lung. I asked when we would be able to start treatment if I could receive more radiation and he said as soon as possible.

The pulmonary specialist was one of the nicest doctor’s I have ever met. He talked about what my oncologist wanted me to have done and went over my CT results from last week in detail (in addition to showing them to us on the computer). He had a completely different opinion on the area of my lung. He didn’t feel that there was any collapsing of my lung, but rather that it was full of substance, most likely disease. The area that he showed us on the screen was about half of my lung which I was very surprised to see. He also didn’t feel it was necessary for me to have a bronchoscopy done, but wanted to speak with my oncologist about it. He spoke with her and came back and decided that it should be done. The bronchoscopy would involve getting some tissue/cells samples from my lung. He explained that I would probably be in pain for the next few days and may even cough up some blood. The procedure was scheduled for 8am this morning.

This morning I showed up at 7am and by 8am I was in the procedure room. I was given some drug in the Valium family to keep me from remembering anything and I was given a nice big dose of Fentanyl to sedate me. I don’t remember anything about the procedure or how I got home. Most of the late morning/early afternoon I spent sleeping. Apparently the pulmonary doctor told Chris that the procedure went very well and that I had a lot of puss in my lungs, which he removed. He said this was probably an indication that I have some type of infection in there. It will probably be a few days before we get the full results from all the samples that they took.

This afternoon I received a call from my oncologist’s assistant that she wants to see me tomorrow to discuss further treatment. I’m hoping that doesn’t mean I won’t be able to receive radiation. I’m hoping to go into work tomorrow morning and go to my appointment in the afternoon.

Happy Thanksgiving!

Happy Thanksgiving!!

With all that has been going on the past few days I forgot to wish everyone a Happy Thanksgiving on my last update. We don't have any plans this year, my dad is just making some of my favorite Mexican dishes. We will spend the remainder of the weekend painting the house (finally) and taking it easy.

Thank you to those who have sent me emails wishing me the best with my treatments, I really appreciate them!

Not So Great CT Results

This afternoon I went in for my labs and appointment with my oncologist. As it turns out she got the full results of my CT scan by meeting with the radiologist first thing in the morning. They went over the films together and compared them to my last scan. I knew the news wasn’t going to be good since my last chest x-ray showed progression, however the news was a little more surprising/complicated than I expected. The CT showed that the mass in my lung has grown, however there is an area surrounding it that could be infection or disease. In addition to all of this, that area of my lung is partially collapsed and there is no flow going into it. Although I’m not having any trouble breathing, they think this could be what’s causing the pain in my back. Two of the lymph nodes that were under control on the prior scan also show progression. They’re not sure if those are Hodgkin’s or non-Hodgkin’s.

Due to the collapsed lung and fast growth of disease/infection, they need to take action right away. I’m scheduled to have an appointment with Radiation Oncology Monday morning, followed by a PET/CT in the afternoon to plan treatment. I will be undergoing my 4th round of radiation treatment since I was diagnosed. I don’t know the details of the length, but I’m guessing anywhere from 4-5 weeks (everyday). In addition, some time on Monday I will be meeting with a pulmonary specialist to have a stint inserted into my lung on Tuesday. The stint should assist with bringing flow back into the collapsed area of the lung. If they don’t insert this, there could be a high chance of me getting a severe case of pneumonia and the infection (if there is any) not clearing up. The procedure will be done under sedation and the stint will remain in my lung for the rest of my life. I of course am not looking forward to all of this, but understand the need and are glad that everything is being done quickly.

As soon as the radiation treatment is complete I will have to go on a new chemo to make sure that my mediastinal mass does not start getting out of control. Right now we’re focusing on the lung mass however.

Again this news has interrupted our travel plans. We were planning to go to Mexico to visit my family during the upcoming holidays and now that will have to be postponed. I’m pretty sad since I was looking forward to it and Chris and I haven’t been able to go anywhere for a while. It will also be our one-year wedding anniversary on New Years and we were hoping to be able to go away since we never had a chance after we got married. I guess I’ll just have to get over this hurdle and plan for something soon after.

My Worst CT Experience To Date

In my last update I had mentioned that my oncologist was trying to do everything possible to get my CT date moved up due to the pain I've been having on my side. After much prying and begging, neither of us was successful at getting anything scheduled earlier. Last week I had gotten a call from CT scheduling saying they had a cancellation, but they couldn't consider me since I had to be pre-medicated. I had no idea what they were talking about and called them back to inquire about it. Apparently some new note appeared on my medical record stating that I was allergic to the CT contrast and that I couldn't have one done without being pre-medicated 12 hrs prior to the scan. I told them that I had no idea where they got that information from and that it needed to be removed from my record, because I didn't want another cancellation to come up where I wouldn't be considered. They told me the note would be removed and everything was taken care of.

A cancellation never opened, so I had to keep my original CT date of today at 8pm in hopes that my doctor would have at least preliminary results by tomorrow when I'm scheduled to see her.

This evening I showed up at 8pm and was called in right away. I was attended by a technician and doctor that I had never seen before (I usually always get the same people). The technician had me change and then had me sit down to get an IV started. The doctor came over to start the IV. From the beginning I knew there was going to be a problem. First, he wanted to use a bigger needle. I was able to talk him into using the pediatric one since I knew he wouldn't be able to get in my vein with the bigger one. He tried two times and was unsuccessful. Both times he kept prying and trying to get into the vein even though I kept telling him to stop because it was painful and there was a bubble of fluid forming in my arm. After that he went and got a nurse, which supposedly was more experienced. She again tried twice and had no success (except for to bruise me and hurt me even more).

After that, the doctor decided that he might try to use my Hickman, but couldn't find Heparin to flush it. He then proceeded to get my chart to look something up and noticed the note about me being allergic to contrast and questioned me about it. I told him I was not allergic to contrast; that I've had dozens of CT's done before without a reaction, and had no idea why that was on my record. After about an hour of arguing and him calling numerous people he said he wouldn't do the scan. I told him I wasn't leaving without having the scan since it was nearly impossible to get this appointment and I needed it done before seeing my doctor tomorrow. I told him to call my doctor to get this resolved (it's now 9pm by the way).

He calls my doctor at home and she instructs him that it's okay for me to have the scan, that I'm not allergic to the contrast, and that this whole thing is ridiculous. He still says he won't do it. After going back and forth on the phone with me and the doctor, my oncologist insists that she will drive down that moment to stand next to me as I'm having the scan done since they don't want to be liable if I have a reaction. He still says no. By this time my oncologist is raging mad and I'm a complete hysterical mess. Not only had I not eaten to prepare for the test, but I had already been poked four times. Before I hung up with my oncologist she said she promised to call Radiology first thing in the morning, throw a ruckus, and try to get me in first thing next week. I was devastated.

After hanging up with her, I asked the doctor if the pre-medication happened to be Prednisone. He said yes. I told him I was currently taking Prednisone just like I had indicated on the form they had me fill out when I checked in. He then said "oh well I guess you're pre-medicated then." Idiot!! He still wouldn't do the CT scan because he couldn't get an IV in me though. He volunteered to call over to the main hospital to see if they would do my scan with my Hickman. They agreed and around 10pm I headed down there for my scan.

As we were entering the main hospital, I somehow tripped and did a big spill on the floor. I scraped/bruised up my knees, hips, and cheek. I somehow managed to wobble to Radiology after being offered a wheelchair. Fortunately, the CT crew at the main hospital was VERY nice and couldn't believe what I had gone through. The nurse that helped said I should never go back to the clinic to have my CT done and should have it done there instead so I don't have to go through this ever again. She put a comment on my chart that my CT's should all be done there instead.

I'm not sure if my doctor will have any type of results in time for my appointment tomorrow, but I'm keeping my fingers crossed since the long holiday weekend will only delay things even further. I'm still feeling a little bit of pain on my side and want to get that figured out. I also don't want to have another round of Velban if it's not working and I need to change treatment. I guess I'll just have to keep my fingers crossed that my oncologist will know something by tomorrow afternoon.

Meanwhile I know tomorrow will be a sore day for me. Not only are my arms bruised from the multiple IV's, but I'm sure I'll be walking like a penguin from my banged up knees and hip. This was definitely not one of my better nights...

Two Long Days At Stanford

I’ve spent most of the last two days at Stanford. Thursday I went to work as usual, but by mid-morning I was having extreme pain on my lower right back (the same place that has been bothering me for a week). I called my NP when the pain was getting intolerable and she had me come in right away.

After much waiting, I finally saw the NP in charge for the day (I didn’t get to see my regular NP since it was a “sick call”). I described my symptoms to her and she went and relayed them to my doctor (she was finally back from sabbatical). My doctor thought it was best to have another urinalysis test done, some abdomen x-rays, and to move up the date of my CT scan. I did the urine test and x-rays and waited several more hours. The NP finally came back after consulting the results of the x-ray with the radiologist and my doctor and said there was nothing abnormal they could see. The preliminary urine test also showed nothing abnormal. The plan for now is to have the CT done sooner than later to try and see what the pain can be caused from. We were there a total of about 4-5 hours.

Today I was there around 10am for my scheduled blood transfusion appointment. It was 11:30am before they even started to give me the first unit of blood. The Benadryl knocked me out for part of the day (I only received a pediatric dose) and I had a visit from two friends, which was very nice. That always makes the time go by faster. The whole process took about 6 hours, which made for a VERY long day. Fortunately I had plenty of magazines with me and Chris had his PSP to play games. Tonight I’m feeling a little more energized, but definitely very bloated and puffy. I feel like I’m carrying triplets in my belly. So gross!

The pain in my side was better today, but it’s still bothersome and hurts a lot when I cough. The doctor that was seeing me while my doctor was gone stopped by to say “hi” while I was there today and mentioned that although they didn’t see anything on the x-ray, there’s a possibility I could have had a stone in my kidney. Again, the CT should show more detail and hopefully rule out anything serious.

For now I will take it easy this weekend, trying to de-bloat and rest.

A Disappointing Appointment

Today’s visit was a little more disappointing than usual. First of all, my doctor wasn’t back from her sabbatical yet, so I didn’t get to see her for the second time in a row. She will be back next time I’m scheduled to go in though so I’m happy about that.

The first issue today was that my red count dropped even more in the last two weeks (even though I’ve been continuing with my Procrit shots). My count is too low to not have a transfusion at this point. In fact, I’m going to be getting two units of blood (I talked my NP down to two from three). I’m not looking forward to it at all, since it usually makes me feel puffy and gross for a couple of days. At least I will get a boost of energy though and my blood pressure should go up a little bit (it’s been very low lately). I’m scheduled to go in for the four-hour procedure on Friday.

The second thing is that I’ve been having an ongoing pain on the right side of my back (right below my rib) for a week now. I notice it mostly when I cough, but it seems to be irritating and bothersome if I’m not on Aleve, Tylenol, or Advil. My NP wasn’t sure what it could be, but she thought it would be a good idea to do a urine test to rule out a kidney infection. I’m hoping it’s just a muscle strain and it will go away on it’s own.

I also had another chest x-ray done today. My NP thought it was best for me to have them done every time so they could monitor the mass in my lung closely. I couldn’t agree more. The not so good news is that today’s x-ray showed that there might be some growth on the new lung mass. The picture isn’t very clear so I will have a CT done in the next week to get a closer look. If indeed it has grown and it's not responding to my current chemo, my treatment will once again have to be changed.

I received a very surprising email from my donor over the weekend. She didn’t go into any details about herself, but hopefully in the coming days I’ll hear from her again and learn more. Apparently she’s been reading my blog all this time! I’m so happy to be in communication with her, what a treat!

A Little Disaster At The Dog Park

We usually take Pebbles and Francesca to the Campbell dog park on weekend evenings. They love socializing with all the dogs and Chris and I enjoy seeing some of the regulars (humans and dogs) that attend. If you haven't been to the Campbell dog park before, it's a wonderful place that is divided into "big dog" and "little dog" sections. The two sections are enclosed and contain both grass and dirt.

On Saturday, Chris and I were standing in our usual spot chatting with a dog owner when all of a sudden two medium size dogs hit me from behind on the knees. I went flying onto my back and hit my head on the ground. It all happened so fast that I didn't even realize at first why I was on the ground until my head started hurting. I eventually got up and was fine, but later on I started feeling some extreme pain on my right toe. Somehow I managed to stub or sprain it and I couldn't put any pressure on it or walk normal. The rest of the night I felt pretty okay besides my toe throbbing.

This morning however, was a different story. When I woke up my neck was in so much pain. I couldn't lift it off the pillow without turning sideways and doing some funny maneuvers. After some Advil and resting for 30 minutes I managed to get up. All day it's been extremely sore and I have difficulty turning it side to side. This evening I put a heat pack on it and it's been doing better. I know it will probably be stiff for the next few days though, which will probably be irritating at work. I guess I'm very fortunate that I didn't hit my head harder and do more damage, especially with my platelets being low. From now on I will have to stay glued to the fence or bench while I'm enjoying the doggies play.

Because I'm sick of dealing with the ongoing fevers, today I decided to increase my prednisone to 20mg. It's a sign that I'm obviously fed up with feeling awful, because there's nothing that I hate more than that drug and its side effects. I'll be back at Stanford on Tuesday for blood tests and Wednesday for treatment...

My BMT Donor

Since my two-year anniversary from my second bone marrow transplant (July 06), I have been eager to get in contact with my bone marrow donor. Recipients in the US are usually able to connect with their donors at their one-year anniversary (given both parties agree to disclose contact information), but since my donor was International the donation agency that she went through had stricter guidelines. A few weeks ago I contacted the BMT donor coordinator at Stanford in regards to possibly being able to connect with my donor. I was told that they would have to check with the donation agency in her country, because even though it had been two years, there are still frozen cells of hers stored for me (these are from when I was supposed to receive a boost of her cells over a year ago and wasn’t able to due to GVHD).

A few days later I got a call back that they had approved for us to exchange consent forms with our contact information. They sent both her and myself a consent form. I wasn’t sure if she would agree or even if she would know what it was all about. I didn’t hear anything back for a few weeks until this morning. She consented and I now have her contact information. I have her name, address (she lives in Germany), phone number, and email address. It will be very exciting to finally connect with her after this long. I’m hoping she speaks some English otherwise the communication may be a little difficult. Regardless, it’s a very exciting time!

This week has been a tough one. I’ve been battling with the usual daily fevers, which are draining me. Thankfully the bone pain and mouth sores were better with this round of treatment. Wednesday I had to work from home and stayed in bed most of the day due to exhaustion and weakness. I’m definitely looking forward to the weekend to relax, although this will all start again next Wednesday when I go back in for chemo. I just feel like there’s never a break…