New chemo regimen and more thoughts

I am home from the hospital and doing much better. About time, eh?

Last Friday, my Oncologist, Dr. Reid and I decided to try me on a different chemotherapy regimen because of the side effects I was having to the Taxol infusions. Dr. Reid explained that the medicine, whose pharmaceutical name starts with a "B" (I can't remember exactly what it was called), was currently in the last stage of its clinical trial. It is generally prescribed to patients with a specific type of lymphoma and those with Multiple Myeloma. Like many of you are aware my Grandfather battled Multiple Myeloma courageously so when she told me this I immediately thought of him and started to cry. I wanted nothing less than one more visit with him, one more phone call, one more chance to tell him how much I love him and to thank him for watching over me and helping me fight through all of this "sickness stuff".

 

Cancer is unbelievably cruel in the most unexpected moments- like today when I struggled to reach a medicine bottle from up in one of the highest kitchen cabinets. I was able to touch the outside of the bottle, but without a chair I was not going to be able to reach it. With the amount of foolish pride I have, it quickly became evident that what I was reaching for would have to wait. I needed to come up with a better plan. I realized that the solution was to look for and find a better tool to grasp that damn bottle not climb up on a shaky chair. Enough about that damn bottle, it wasn't worth it anyways. Another cruel moment is when I have to carry things from one room to another. I have only one hand now to carry things as my other one carries the cane I must walk with. Think about it for a moment. What if you only had one hand to carry things with? It’s pathetic to me that now I always make sure my shorts or pants have pockets just in case I cannot grab or carry everything. It is these moments of hardship and struggle that I feel the urge to yell out my frustrations. Thankfully most of the time it stays inside the confines of my own head, but I will admit that these thoughts are generally proceeded by an expletive or two.

Like the coin has two sides, there is also other ways to think about cancer and what it entails. For example, this fight against KS has been really overwhelming both positively and negatively. I have been humbled by those who have taken time out of their busy days and schedules to help Eric and me out. Family and friends who bring over dinner when we are too exhausted to cook after our energies are depleted. The brave souls who have volunteered to do household chores like laundry and cleaning have humbled me with their compassion. Their willingness to do whatever is needed no matter how rudimentary or unpleasant is not lost on me. For instance, I have one friend who comes over to visit and for the last few visits she has brought her own yellow kitchen cleaning gloves. I have told her that she doesn't need to clean up every time she visits and that her company is just as cherished as her amazing ability to beautify a kitchen. These moments are just a few of the wonderfully humbling experiences I have had. It is in these moments that while my eyes may be filling up with tears, my heart dares to hope again for recovery and a cure.

 

Getting back to the new regimen and how I am responding to it, I believe that the shot makes me more nauseated than the infusions did and the length of time I feel crappy is longer. Conversely, it has not given me one neutropenic fever or secondary infection requiring hospitalization. So for now I will follow the advice of a doctor who knows far more than I do about cancer and specifically KS. If in a few months there are not significant and noticeable improvements in my condition I can always return to the Taxol infusions despite the volatile ramifications that it has on my health.

 

I don't believe I mentioned earlier when I will be receiving this powerful shot. Every Friday for three consecutive weeks I must get the shot. The fourth week of the 28 day cycle, I get a much needed recoup and recover week. Unfortunately for my poor stomach, the effects of the medicine are cumulative meaning that the third week of every cycle will be the roughest. Yippee!

 

Tonight I am feeling hot, tired and backed up. Sorry if that's too much information, but it’s the truth. Tonight as I say my prayers I will remember to thank God for the good things in my life and for the many angels he sends my way. Hope you all have a pleasant evening and the remainder of your week goes quickly and painlessly. Be well friends. Good night.

Another visit to the hospital and another scary close call

Friday July, 19th, my father brought me into UCSD Emergency because of a spiking fever around 102 degrees. I was also having quite a bit of trouble breathing due to the amount of swelling in my chest cavity.  To say i was feeling scared would be a gross understatement. I was terrified that this was it- my last and final trip to the hospital. After being triaged and having more vials than i could count drained from the port in my chest, i was moved into rm 24. Room 24 is a private room and one of the more spacious rooms in the ER. I was grateful to finally be in a room with just eric and my dad. After what seemed like an eternity pain medicine, specifically Dilaudid, was brought in and administered. Finally I felt some relief from the pain and suffering I had been feeling all morning. I could tell by the looks I was getting from both my dad and Eric that they were just as scared as I was although they would never show it.

I spent the next ten days having a myriad of tests, examinations and procedures. Two of the more notable procedures were the thoracentesis and my first ever blood transfusion.  The first required that a needle be inserted into the plueral space between the inside of my thoracic cavity and my lungs. Then the needle was used to draw out fluid. The doctor doing the procedure was a very nice woman who calmly and sweetly asked if I would like to see what they had extracted. I said yes and she showed me a bag full of what looked to me like cherry 7UP. The doctor said it was 1.1 liters of fluid. Thats a lot when think about it and no wonder i was having difficulty breathing. As soon as it was over i was breathing easier and feeling a lot better. The blood transfusion was also quite helpful. When my team of doctors said that my hemoglobin, red blood cells, hemocrit, and white blood cells were all too low I wasn't prepared to hear what they were going to suggest. A blood transfusion. I thought to myself isn't that for really sick people and I'm not one of them. After crying with Dad and with Eric over the phone both men were finally able to calm my apprehension and fears. Having the transfusion was no big deal especially after going through chemotherapy infusions. I was surprised at how successful it was and how much better I felt afterwards. Whoever donated that blood type A positive... Thank you. You helped me feel better and for that I am grateful.

I started a new chemotherapy medicine on Friday night. I could not tell you the name other than it starts with a B. The difference between this new medication and the old one is that the new medication is administered buy a shot under my skin instead of the long two and a half hour infusion through my port. So far the only side effect from the chemo that I have felt is some pretty powerful nausea.  I am not sure whether that was from the chemo or the Del Taco I had for dinner that night, but I'm pretty sure it was the chemo medicine because the burrito was the best tasting burrito I have ever had. I am really hopeful that we have finally found the right medicine. This shot is also used to treat multiple myeloma which is the cancer that my grandfather so courageously fought.  While I wish this chemotherapy treatment has been around while he was fighting I know that he is watching from above and smiling down because he knows this new medication is helping me kick cancer's ass  like he was never able to completely accomplish. My fight is for you Grandpa.

I finally was able to make my escape from the hospital eleven days after going in. Doctors, nurses, and my family all said I looked much better then when I came to the hospital. Those hardcore antibiotics, early morning pokes and prods, and invasive tests were worth it. I feel much better. Now I plan on working on getting stronger, doing the stretching exercises the physical therapist recommended, and regaining my mobility. I am being sent home with a hospital bed (one of the cool ones that goes up, down, and every which way) and a wheelchair. In my mind, the bed is no big deal, but the wheelchair I struggle with immensely. I can not help crying when I think of my years as a City of San Diego lifeguard or running with friends in college. Where is that Carleton? This new wheelchair bound Carleton isn't the same and dare I say a bit pathetic at controlling his chair.

I will get better at the chair, just as I will get better overall with my health. It will just take time and definitely a lot of love and support. Im at times completely overwhelmed by my current situation but today I am not. I am hopeful and happy that I have such wonderful friends, family, a loving partner, and the best team of doctors working on my behalf. Thank you all. As always take care of one another and be well friends.

The rollercoaster continues: surgery, hospitalization and the slow process of recovering

Much has happened since my last blog posting. I will try and give you a brief recount of the important stuff then I will let you know where things are today and what I have to look forward to in the future……..

 

So two Wednesdays ago seemed like any other day. I quickly tire after a morning full of errands and chores and decide that what I really need the most is a nap. So I stripped down and laid down for a nap. When I awoke I was in the most unbelievably excruciating pain in my right groin/hip area (basically right where your leg meets your groin). The pain was so intense I could barely move around in the bed let alone stand up and walk to the living room. With tears streaming down my face I struggled to make it into the living room. I had no idea what this pain was at this point. I thought it might be a really bad Charlie horse, but I have had those in the past and they go away after some time and this was definitely not going away. Thankfully Eric arrived home from work shortly here after and told me to drink a glass of juice and tonic water in case it was a charley horse. So I did, and took some of my prescribed pain medication (morphine) and tried to sit comfortably on the sofa. Neither the tonic water nor the morphine had any effect on the increasing pain I was feeling. Eric took one more look at me and said you're either calling an ambulance or you’re getting in the car and we are going to the hospital. I was in so much pain there was no argument from me which I think surprised him a little too because he realized that this was serious.

It wouldn't be normal if I didn't leave something I needed at home and sure enough I left my id in my wallet at the apartment and poor Eric had to drive all the way back home and get it. I called my Dad and then made the longest five steps of my life up the driveway into the entrance to UCSD Emergency. I was triaged and taken right away to one of the beds in the hallway. I have seen people in these beds before, the homeless, the burned, and the really sick ones who just lay there screaming for someone to help them or put them out of their misery. I never thought that I would be one of those people, but I found myself in so much pain that all I could do was yelling for someone to please help me. I finally got a doctor to see me and some pain medicine in my system before I was moved into a private room. After lots of blood had been taken and all kinds of tests sent off for analysis, one doctor whose name I can't recall, came into the small hospital room in ER to talk with myself, Eric, and my father. He said that they were worried about a specific kind of tissue infection and that I would need to have emergency surgery that evening.

 

What? Come again?             Are you freaking kidding me?

 

I looked at Eric whose eyes were different than normal. They weren't as bright blue as they normally are, but rather a grayish blue that registered in my mind as him being scared. My Dad had a similar look and the silence spoke volumes to me. I began to plead that I did not want or need the surgery, but was quickly silenced and explained that I didn't have a choice- I was going to have the surgery. Scared, hurting, and uncertain of what they might find I had the surgery. My mom told me I was brave, but I told her I didn’t think I was because everyone else told me I had to.

 

Moving forward in time, I woke up in ICU on Thursday, but honestly I don't remember much from the next couple days because of the amount of pain I was in and the amount of strong medications I was taking. I had the enjoyable experience of a Foley Catheter and three central IV lines coming out of my neck. In short, I looked pretty sick, but pretty badass at the same time. For the first time in my life I needed someone to literally wipe my ass after using a bedpan in my hospital bed. Correction, after using two bedpans (filled the first one and needed another one). I spent a week in ICU recovering with wonderful nurses taking care of me and fantastic friends and family who came to sit with me and cheer me up. I was discharged from the hospital 9 days after going in and just in time to be home for the Fourth of July holiday.

 

Since coming home I have been slowly recovering from surgery and the blockage in my lymphatic system that has caused the most unbelievable swelling. I am not a doctor, but I believe what has happened is that one of the tumors from my KS has grown inward rather than outward from the skin. This tumor is then either completely blocking or pressing on lymphatic draining channels causing this tremendous buildup of fluid and swelling. I hate to be graphic and gross, but I really didn't think it was possible for one's private parts to be so swollen. I mean I have seen shows on National Geographic, but I never thought something like that could or would happen to me. The only relief comes from the bath tub or heating pad and both are only temporary. The morphine pain killer I have been prescribed barely touches it and it makes me feel quite under the influence. I take it before bed with an Ativan and my Gabapentin (deadens nerve synapses in my legs to relieve pain). The combination knocks me out so at least for a few hours I can rest and be in peace.

 

Today I have an appointment with the oncologist Dr. Reid. I have many things that I want to discuss with her as I am sure that she has many things to go over with me. After talking things through with myself, Eric and my Mom and Dad; we all have agreed that getting chemo is the number one priority because of how it helps the swelling and KS. I am planning on just going in there and looking her straight in the eyes and saying that I understand the risks of doing chemo if my blood work isn't high enough and I also understand the risks of secondary infections such as neutropenic fever should I have the chemo, but for me the risk is worth is because I don't know if I can endure another week or two weeks suffering in this much pain and discomfort.

My appointment is at 3:20pm this afternoon so until then its hurry up and wait. I will keep you all posted on what happens, but please keep your prayers and your love coming my way. I really could use it today. Thanks again friends and until next time, be healthy and happy.