I will be having a very busy week, Thursday I will be seeing my Oncologist, Friday the Urologist, and then on a date yet to be determined, I will be getting a camera up my butt. Not very excited about that one.

My nine-year old grandson called me the other day, after his mom told him that grandpa had to see the Urologist. He told her that he had to talk to his grandpa, right away, so he called me. He told me that it was not to bad seeing the Urologist, and it didn’t  hurt much when he checked you out. He told me he would be calling me again to remind me that everything would be okay. He is a pro when it comes to seeing doctors. He has had four operations on his back, due to spina bifada, and continues to have a smile that fills his whole face. If I can learn any lesson from him, it is that joy and happiness is not dependent on your current situation. For those who know him, he lights up a room with his cheerfulness.

I think I will talk about the spleen and how it works for us. You can think of the spleen as a blood filtering organ.  It is about the size of your clenched fist and located just a little lower than your rib cage, on the left side of your body.  Normally it’s not possible to feel your spleen by mere poking around, even if you are skinny.  But when it is enlarged (either due to CLL or some other illness such as an infection) a  trained doctor can feel the tip of the spleen just below the rib cage by physically touching that area. If your spleen can be felt by just touching, it is already enlarged beyond its normal size.  A CAT scan will reveal exactly how enlarged it is and whether it needs to be treated. I can easily feel mine, especially when I am laying on my back.

Most often you are not likely to feel any symptoms of spleen enlargement, at least during early stages of the process.  But as it grows larger it may press against your stomach and that may cause you to feel full – I am finding that I am not able to eat those large meals, that I used to eat. However, I had a very large meal at a restaurant yesterday afternoon, and immediately had some minor pain in my stomach.  I have read that patients with very large spleens sometimes walk funny, but that is not my case, I have walked funny all my life (lack of vitamin C I think). Seriously, I still walk the same, and have no back pain, so my spleen may not be in that very large category.

More important symptoms of an enlarged spleen are anemia and thrombocytopenia – low red blood cell counts (4.23-5.75 is good) and low platelet counts (160,000-410,000 is good), respectively, which in my case (as of 1/06/12 RBC 3.42 and Platelets 63,000) . These are the two symptoms that matter most to us as CLL patients and I will be focusing on them. As you would guess, side effect of low red blood cell counts is deep fatigue.  Red blood cells carry oxygen and with reduced oxygen carrying capacity fatigue follows soon after. So far I have been quite fortunate in this area, I do not get fatigued, but I do loose my breath quickly. Similarly, low platelet counts mean poorer blood clotting capability and you may find you are prone to bleed longer if you cut yourself accidentally. This is my big problem, example, four weeks ago, my nose started bleeding, and wouldn’t stop. After one and one half hour of bleeding, my wife had to take me to the VA Clinic. I have personally found that having low platelets is not a good thing.

Again, your spleen acts like a spongy filter for your blood. As blood circulates through your body, some of the cells (red blood cells, platelets) get worn down and damaged.  It is the spleen that removes these damaged cells from circulation. The spleen also acts as a storage location for extra red blood cells and platelets newly minted by your bone marrow.

Unlike red blood cells and platelets which are manufactured only in your bone marrow, lymphocytes can also multiply in the lymph nodes and the spleen.  In healthy individuals the spleen is important in putting out additional troops of lymphocytes  when an infection is detected (one of several types of white blood cells) (20-46 is good, mine being 55). Again I know it is high and not good, but I have been free, so far, of any illnesses or infection. I will say here, that my overall white blood cell count is on my side so far (4.0-10.6 is good, mine is 12.5). Now I know this is not a good reading either, but over the last six months it has been as high as 18.5.  Hence, your spleen is an important part of the first line of defense in fighting invading pathogens.  The spleen also serves to trap some bacteria.

An enlarged spleen affects many vital functions. For instance, as your spleen grows larger, like any clogged filter it starts to trap normal red blood cells as well as abnormal or damaged ones, reducing the number of healthy cells available for your bloodstream and it also traps platelets, my biggest problem. Eventually, excess blood cells and platelets trapped, further clog your spleen, interfering with normal functioning. It can even outgrow its own blood supply, which can damage or destroy sections of the organ.

As my spleen enlarges, because of my SLL/CLL, it poses a special problem. As the filtering capacity of my spleen gets compromised, perfectly good red blood cells and platelets get trapped in there and as seen above, and there is a drop in these blood cell counts every time I get a CBC blood test. Even if your bone marrow is doing its job and turning out the required number of red blood cells and platelets, and there is no trace of autoimmune disease, the fact that your spleen is trapping these good cells can play havoc with your blood counts. And as you know by now, it is not a good idea to live long without healthy red blood cell or platelet counts.

Equally serious is the risk of a ruptured spleen. Even in healthy people it is possible to get spleens damaged, especially in car crashes and contact sports like football. Rupture is a much more likely possibility when your spleen is enlarged. My doctor has told me that riding my motorcycle is not the safest way of travel, and my wife agrees. I know that, but I also know that leaving the house and walking may not be the safest mode of travel either, especially if a car runs over me. I realize this is not the greatest reasoning, but hey, what else do I have, I like to ride my motorcycle. I guess what I am saying here, is that I cannot be afraid to live my life, I do take precautions, just like everyone else, but I don’t know the future, so why fret over it.

It is important to understand the reason for the enlarged spleen, and I believe my Oncologist has, concerning mine,  and therefore target the treatment to correct the problem. If the cause for splenomegaly is an infection, then it is appropriate to treat the infection with antibiotics. But if the underlying problem is CLL, then it makes sense to treat the CLL itself with appropriate chemotherapy. In many cases treating the spleen may take center stage if it is causing sharp drop in red blood cell counts and platelets. This is the one factor that has placed me in Stage 4, and will require me to have chemotherapy more than any other thing.

  • If you have an enlarged spleen, it makes sense to avoid sports such as skiing, football and hockey, but not motorcycle riding.
  • If you have had a splenectomy, you might consider getting one of those medical bracelets that says so.
  • Last but not least, please remember that while a splenectomy is not something a healthy person would want to do just for fun, in many CLL patients suffering from fatigue, shortness of breath, as a result of dropping red blood cell counts, and excessive bleeding because of low platelets, getting rid of the diseased spleen will give you a new lease on life.  Making these tough calls is what often sets apart the survivors from the easy victims in this deadly serious CLL “game”.

Therefore, since we also have such a large cloud of witnesses surrounding us, let us lay aside every weight and the sin that so easily ensnares us. Let us run with endurance the race that lies before us, keeping our eyes on Jesus, the source and perfecter of our faith, who for the joy that lay before Him endured a cross and despised the shame and has sat down at the right hand of God’s throne. Hebrews 12:1-2